Rough Few Months

[GwenVG]

I haven’t been here on a while, and quite a lot has happened. I’ve been getting really sick recently and really haven’t felt healthy since September. I got bronchitis as soon as school started and it didn’t fully clear so two week later I developed lower left lobe pneumonia and had a fever of 103. My doctor put me on levoquin and it resolved.

2 weeks later I got bronchitis once again along with acute sinusitis. My otolaryngologist refuses to do deviated septum surgery, but i think I need it. I have never been able to breathe out of both nostrils at the same time and it hinders my ability to get a good nights sleep. I think I have to find another doctor who is willing to do the surgery because my voice has gotten worse with my congestion and I constantly sound nasally.

My mom want to homeschool me through the school district/online.

Has anyone else been homeschooled because of PCD? I really want to go to college and just applied to 8 of them. I just need a little extra help. I’m afraid to go to school because I get so severely sick. What should I do?

[fionac66]

Hi Gwen - sorry to hear that you are struggling. Have you tried Nasal rinsing for your sinuses? My boys use it and find it helps. neilmed.com/uk/directions-v...

Are you in the UK?

Best wishes

Fiona

[branch9]

Dear Gwen,

I am so sorry for your struggles. The transition of fall to winter is a very vulnerable time, I think, and others have verified this; it takes an extra toll on the body. Your body is already operating under a heavier load than a "normal" person. With your eyes on college, and because you have previously expressed disappointment in your peers and teachers, it probably wouldn't hurt to home-school. You likely won't miss friends and teachers who were hard on you. Home-schooling could give your body a break: more rest, and less exposure to germs.

However, college will provide new challenges. College students are notorious for skimping on sleep, studying late, and working hard on their passions (such as theater for you??). When I first went to college, I had a very difficult roommate who made noise all night long, so I couldn't sleep, and I got so sick I thought I'd have to withdraw. (and she smoked! That was back in the day when people smoked everywhere!) The college administration refused all my requests, but then my doctor wrote a letter to the president of the college, and they finally allowed me to move into an empty dorm room, that was already empty. So maybe a single room could help you. That was in the dark ages, and it was a very backwards, stupid institution which I transferred away from. But a private single room may be something you want to try.

You will have to mount a careful plan to keep yourself healthy at college. You'll have to keep your eyes on the prize. And see if you can line up a health advocate at college - a college staff person who looks out for students with special needs. I think colleges are better about this now. Maybe that should be part of your college search.

I wonder why they are refusing sinus surgery. Oh, I remember you said you have a tricky nasal structure, right? Still, maybe you could try other doctors? I had my septum surgically corrected, and it helped, but I still do get sinus infections. I mostly get them when I fail to get extra sleep. I rinse my sinuses daily.

Your journey has captured my heart. I know you can have some good stretches. I had a good year last year. Sometimes that can happen. I've also had so much advice on staying positive. And staying calm when you think you're getting sick again; feeling confident in your body's natural healing process. One friend told me about a book in which the author advocates talking to your cells. I know all this might sound like a bunch of crazy talk, and it is not a replacement for professional medical care. But there is indeed a mind-body connection; I think this is borne out in research. So it can be a part of your self-care.

Wishing you all the best, Gwen.

Anne Marie

[GwenVG in reply to branch9]

Dear Anne Marie,

I talked with my principal and guidance counselor earlier this week. We have decided to do online schooling through the school system. And i have a tutor for 10 hours a week. I have already missed 45+ days of school just because of my health. And now i can actually focus on my health and graduation.

I’m really glad that i get to do this, but at the same time I have all this free time now and its really weird. I’ve gotten rejected to two colleges so far but i haven’t heard back from my top school so i’m hopeful. I applied for a nursing program too. I want to study pediatric pulmonary nursing maybe in the future. There’s a lot I want to do. But i can’t decide between musical theatre and nursing. They have both impacted my life in many different ways. I’m just lost but i’m happy.

I just want to graduate and see as much of the world as I possible can. I just can’t wait to start college. I’m excited for the future. And i’m looking into a new doctor for my PCD because i need better care because of all of my recent illnesses.

If I don’t talk to you before the holidays I hope you have a blessed holiday and a bright new year. Thank you for all of you advice, i take it all to heart.

-Gwen

[branch9 in reply to GwenVG]

Thank you, Gwen, for your uplifting news. All your hope and happiness is helping you heal. Everyone says you don't have to decide your whole life when you start college, but it is very good that you have two strong interests. They propel you forward. And there's no reason that you wouldn't end up doing both at some point.

Have a joy-filled holiday, Gwen!

Anne Marie

[fcfilice]

Hi GwenVG

Repeated respiratory infections can be hard to overcome I feel for you as I have been in that situation before. Take care of yourself first by getting treatment.

I had a hard time in college and went thru almost the same situations as you. To be honest I did well from online and part time studies in college and plan to keep learning online and part time because I can. (knowledge is power and learning is forever..)

[Chrissie82]

Hi Gwen, I find Immunpro Defence Blocker by a company called Hùbner to be very useful. They are natural tablets that you take when you feel an infection starting, you can take a long side antibiotics, they just help to nip things in the bud and boost immunity . I get them from Boots but you can buy online to x

[Baynajarian]

Gwen,

I too had the same issues as you when I was in high school. I missed so much school due to several bouts of pneumonia per year. It was very difficult. Now, being in college, I can tell you that it is definitely doable so long as you keep up with your treatments. Also I would suggest you telling your on campus physician about your situation and meeting with him/her to discuss a sick plan. Since my school physician is not familiar with PCD, often I can simply go into the doctor when I start to feel myself getting sick (before it gets to bad) and she will basically ask me what I think I need and I will tell her I need antibiotics (levy) and steroids (prednisone). OF course she listens to my chest ect. ect. but she trusts my judgement.

One thing I can say for sure is that I have gotten sick a lot less in college than I did in high school and this is partly because the days are not as long. Some days you might have one class only, others you might have 4. The long days in high school definitely contributed to me getting sick. I find it easier now to pace myself because I have a lot more free time to doo treatments and take a breather if I overworked myself. Of course there is a lot of work that goes into each class and lots of hours you need to put in studying, but again, you get to pace yourself how you want. It is so much better than waking up at the same time every morning and sitting in school for 7 hours around zillions of germs..

Hope this helps!