Do You Think You Can Be A PH Patient And Manage A Challenging Career?

[jen-cueva]

I am fortunate that I became PHriends of this awesome young man. Sean was certainly one of a kind and never stopped giving up on his dreams of becoming a doctor.

@colleensteele, you did an exceptional job on your interview with his amazing mom, Evan. Telling Sean’s story is important as he was such a huge part of many of our lives.

I don’t know how he did this all while managing his PH. His persistence and passion continue to inspire me.

Thank you for sharing this and doing such a great job.

[Roger Bliss]

That was a good article. The theme is never give up…..I like that. While he did give up for a couple of years, he kept pushing himself after. That’s a good thing

No matter what they tell you, live your life like you are going to live forever. Live life to the fullest, the best you can. If they tell you you only have so long to live…….it’s your job to prove them wrong like Sean did. So many people just give up.

When I was young I was on the wild reckless side of the spectrum. My mother swore I paid for the local doctors motor home from all the visits I made from being busted up. When I was 16 the doctor bet me $100 I wouldn’t live to be 18 if I didn’t cool it. Naturally I didn’t cool it. When I was 18 I went to collect on the bet. He bet me double or nothing I wouldn’t make it to 21. The doctor died before I turned 21….he was only 45 at the time. He died from all the stress he was under from working too much/hard….his chain smoking probably didn’t help him much either.

[jen-cueva]

Hey @wheeldog, how are you doing? How’s work going for you? Are you still feeling pretty good?

I also wanted to check in on a few I know are working and dealing with PH. How are y’all managing, @dawnt, @jenniferbeaty, and @traceyaustralianmigration-co-za?

Is anyone else working and trying to balance PH? We would love to hear from you, too.

[Dawn]

Hi, @jenc. I’m doing well with working. In August, one of our busy months, our team was in office every day. Now we’re back to our hybrid schedule with 2 days at home, 3 in office.  We were recently told that we’ll be able to continue our hybrid schedule indefinitely, as long as we fulfill our duties. I was so hoping that would be possible, and it’s a great relief. I love being home with my two doggy boys!

 

[jen-cueva]

Hi @dawnt, how did you manage to get into the office daily in August? I bet you and the boys are so excited you’re back on that hybrid schedule- keeping it indefinitely is incredible, and I know the best for you and the boys.

I can imagine getting up each morning, getting dressed, getting the boys out and back in, and driving to and back home after a busy day was challenging. Did you notice any changes in your PH symptoms?

Thanks for your update and for sharing your experience with us. Did I already ask you what you do for work? I can’t recall.

Have a great new week and take care of yourself- hugs.

[Dawn]

@jenc, I probably should have worded things a bit differently. During August our team was in office every weekday.  We still had our weekends off. I work at Penn State University, in the Bursar’s office. Our team handles all tuition bill payments, reconciliation, refunds, account maintenance etc.  I will admit that I was dragging going in 5 days in a row.  Those two days at home give me a rest, and I don’t have to worry about getting tanks refilled so I have enough for the week and then Saturday at the farm. The biggest difference I noticed, beside missing my boys horribly, was my level of exhaustion. So many days I didn’t want to get out of bed. I’ve also noticed since I’ve been back at work that although I have ‘off’ days with the breathing that I notice at home as well (and use my concentrator those days) with more moving during my days at work I’ve been surprised how much more I feel the impact of my breathing being ‘off’. It makes sense, with more walking into/out of the building, getting to my office, getting things done throughout the day, but it’s been very noticeable to me.

[jen-cueva]

Hi @dawnt, that makes perfect sense to me. You push your body more as you get up, dressed, out the door, into the building, etc. If this were me, I would certainly notice a difference in my shortness of breath.

At home, I’m sitting, and our condo is pretty small. So, even days when I go to the lab, etc. I notice I’m struggling more, even while wearing oxygen. I know I would not adjust to getting up and into an office to work five days per week. So, kudos to you for August. I bet it was a long month for you- and the boys.

Yay for using your concentrator when you feel like your breathing is “off.”

I am guessing each August is a busy time for you and your team to prepare for a new school year. Thanks for sharing more about your work at Penn State with us. I don’t think you shared that before. That’s a lot of paperwork and time-consuming, I would assume.

Keep listening to your body and take care of yourself, my PHriend.

[jen-cueva]

Hey @Dawn , it’s been far too long since I’ve heard from you, my dear PHriend. The last time we spoke, you were preparing for either hip or knee surgery. You’ve been on my mind, and I’ve been thinking about you often.

Over the weekend, Manny and I went for a drive and passed several equestrian centers. It immediately made me think of you, your love for horses, and the time you spend volunteering at the stables. When you have a moment, please share an update. I’ve been worried about you, and I know others have missed your posts as well.💜

[Rowland]

Hi, this was exaclty the kind of post I was looking for when I joined this forum. I was diagnosed with IPAH two years ago (my mother died from what was then known as PPH is 2007), I work full time in a hybrid 3 days ‘in the office’ 2 days at home. A set up which is highly unusual for my employer, they made the accommodation (and many others) for me when I got ill, and I super grateful for that. I am Head of Conservation and Curator of Reptiles at La Aurora Zoo in Guatemala. Its a high pressure job with around 250 animals and a small team under my direct responsibility. I also am direcotr of several nationally important conservation projects that breed and reintroduce highly endangered native species back into the wild. I feel very lucky to have a job that I am passionate about, I have worked in conservation for over 20 years now, and it definitely helps during some of the tougher mentally challenging times.

It is a double-edge sword though – its a challenging job, mentally and physically. The zoo environment is on of constant flux, so you have to be ready to spring into action (although very slowly in my case hahahahaha) at any givne moment. That can be difficult when your is just saying ‘I need to rest and be in bed.’ Because the traffic so awful in Guatemala, I have to leave my house at 4:30 am at the latest in order to beat the congestion. Even three days a week thats challenging and requires a certain force of will that is difficult to maintain as that too require input of energy.

Its a huge balancing act really, having enough energy to do the thing I am meant to do, not overdoing it, having enough energy to still enjoy friends and family when I am not at work. I am really interested in others do this and keep maintaining positivity?

[jen-cueva]

Hi @Rowland , Wow, it sounds like you have a busy yet rewarding career, especially given your passion for what you do. It’s great to hear that your employer supports you with a hybrid schedule and the flexibility you need. However, I can imagine that on days when you’re required to go into the office and are experiencing heightened PH symptoms, fatigue, or side effects from your medication, it must be incredibly challenging. Have you considered discussing with your boss the possibility of increasing your flexibility? As we all know, PH can be so unpredictable!

With the dynamic nature of your role, which requires you to be ready to “jump” at a moment’s notice, have you thought about the possibility of requesting an assistant or support person? It might help ease the load on days when you’re not feeling 100%. The commute, especially with traffic and early mornings, must make for a long and exhausting day. Do you typically try to space out your onsite days with breaks in between to give yourself some recovery time?

I’m fortunate to work a few hours a day for Bionews, the parent company of PH News, which manages over 50 websites dedicated to rare and chronic diseases. While it’s a part-time role, some days it can still be a challenge to balance everything, especially since I’m remote..

Do you have access to any time off in Guatemala, such as disability leave or paid short- or long-term leave? How long have you been working there? Finding a work-life balance while managing PH is no easy task, and you’re certainly not alone in this journey. It’s a continuous process, as each day can bring its own challenges.

Prioritizing self-care, staying positive, and listening to your body are essential. Taking time to rest and recharge is just as important as the work you do. Thank you for sharing this, my PHriend. With time, you’ll discover what works best for you, even if that changes along the way.🤗

[Rowland]

Hi @jen-cueva , yes it is very rewarding indeed despite the extra challenges living with PH brings. I have been at the zoo for four years now, and it would seem I proved my worth during the time before I became ill!

The board of directors and the higher administraion have been amazingly supportive, especially given the lax attitude to employment usually encountered in Guatemala. They have already made several big accommodations for me, that all came from them without me having to ask. The hybrid working was their idea, they hired me an assistant to a) help while I am here, and b) so I can train them up to continue the work when I am no longer able to work (whenever that might be), and most recently they surprised me with a mobility scooter so I can get around the zoo more easily (its over 1km from my office to the admin buildings). That has helped immensely, and I am extremely grateful.

I am also lucky to have a decent amount of autonomy, and my direct line manager is very supportive and understadning of my needs, so if I need to take half an hour out in a day after something more strenous, or if I am not feeling well, there is no questioning of it. There is, rather surprisingly, a pretty good social security system here as well. They provide me with all my meds free of charge, and if I need a prolonged period off work then I can get ‘suspended’on health reasons and social security pays 75% of my salary during that time, with zoo making up the final 25%. So it also isnt so much of a financial burden on my employers an dI don’t lose out financially. Pretty good deal, I reckon, especially as I am a foreigner.

The thing I am struggling with the most mentally at the moment, is the feeling of being non-productive. Which I find very disheartening. My best time for writing and creating, which is a big part of my role, is in the morning. But I take diurectics in the morning, so I am on and off the toilet all the time, which breaks my flow of concentration. By the afternoons, I am usually so tired that I save menial admin tasks that I can cope with a bit better. I am still learning how to manage that, and manage my expectations of what I can achieve on a given day.

Physically, getting up at 4am and spending about 12 hours away from home, is most definitely a challenge. Its exhausting just doing that in itself and takes a force of will to get up in the morning.

I use the subject of the work as the movtivating leverage, but sometimes I just want to stay in bed and sleep for a whole day. Having a remote part-time job sounds like a good way for you to manage your time and energy!!!!!