This topic contains 28 replies, has 6 voices, and was last updated by  VK 2 weeks, 4 days ago.

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  • #19633
     Jen Cueva 
    Participant

    I was reading this article from The NY Times and thought some of you may find it helpful. For those with PH who are still able to work, have you told your employer abut your PH? If so, did you wait awhile to inform them or tell them from the beginning?

    If you did inform your employer, how did it go? What tips would you offer others who may be scared to talk to their employers about their PH?

  • #19644
     Colleen Steele 
    Keymaster

    This is such an informative article Jen. I’m sure it will benefit several of our members! Thank you for sharing.

  • #19645
     Jen Cueva 
    Participant

    Thanks Colleen ! I am glad that you were able to read the article.

    You’re awesome!

  • #19659
     V.R. Peterson 
    Participant

    Thank you for the very informative article, @jenc.

    My son didn’t have much choice but to disclose his Pulmonary Hypertension when he ended up in ICU for a couple weeks when he was diagnosed. His employer has been wonderful about accommodating his medical needs (mostly time off every time he ended up in the hospital, whether for illness or surgery) every step of the way.

    • This reply was modified 1 month, 2 weeks ago by  V.R. Peterson.
    • #19662
       Colleen Steele 
      Keymaster

      @mamabear007 that’s a blessing that your son’s employer is so understanding. I think it’s important that our kids disclose their medical challenges with not just an employer but anyone they deal with on a regular basis.

      My son would disagree. Even post transplant he doesn’t want to tell people that he had a heart and lung transplant. He doesn’t want it to define him or give him special attention. I can understand that but I think it’s too important not to be up front about. He’s 19 though, so it’s his decision to make what he tells people and what he doesn’t.

      If I may ask, what kind of work does your son do? Mine is starting to think about getting his first job but it has to be something that he can do while attending college.

      • #19672
         V.R. Peterson 
        Participant

        @colleensteele, I don’t mind at all you asking my son’s occupation. He’s the meat manager at the local grocery store.

        @jenc, when my son first started getting pneumonia on a monthly basis (and wasn’t getting better between courses of antibiotics), I begged him he needed to find another doctor. He thought I was being the overprotective (and overly worried) mom. Finally, his co-workers had an intervention of sorts. One of them had a really conscientious doctor she recommended, so that’s who my son switched to. The new doctor didn’t know what was going on, but he knew immediately it was something more than pneumonia that wasn’t going away. Sent him to a cardiologist, who sent him to a pulmonologist, who diagnosed him with PH (all in less than a week). Talk about what a difference a good doctor can make! Did I mention that I love his co-workers?

      • #19673
         Jen Cueva 
        Participant

        Wow, @mamabear007, I am so happy that your son has such awesome coworkers. As a mom, I’m sure you were worried but you knew something more was going on. I’m glad that your son’s coworkers had this “ intervention”, which literally helped saved his life away. No wonder you love them so much sounds like they are like family.

        Often, it takes someone else, other than mom when we are younger for us to listen.

        His job as a meat manager sounds physical demanding. Has he healed from his injury already? Thanks for sharing, and what a story! Those coworkers are blessings.

      • #19674
         V.R. Peterson 
        Participant

        Thank you, @jenc. Unfortunately, my son hasn’t healed from his injury. An MRI revealed two torn tendons, one torn but not totally severed, the other totally severed. The doctor recommended surgery, but as stubborn as he is, my son opted for physical therapy. The physical therapist says he has much more strength in that ankle than anybody else he’s ever seen with that kind of damage — still, I want to roll my eyes at my son’s stubbornness. At least his wife is a nurse. If his starts getting worse, she won’t put up with him not going back to the doctor. Thankfully, his wife is as stubborn (if not more so) than he is.

        • This reply was modified 1 month, 2 weeks ago by  V.R. Peterson.
      • #19676
         Jen Cueva 
        Participant

        Good morning, @mamabear007, I’m so sorry to hear that your son hasn’t healed yet. I can understand your frustration with his stubbornness. I’m suspecting, he’s always been a stubborn guy.

        I’m delighted to hear this his wife is stubborn as well. I can see y’all tag-teaming him when needed. I tend to think most nurses are quite stubborn. That’s what I did pre-PH. LOL

        I have confidence that your DIL will get him to the doctor.

      • #19682
         V.R. Peterson 
        Participant

        Thank you, @jenc and @colleensteele. Yes he has always been stubborn, and yes he has caused me many sleepless nights (not that he would ever admit it). Thank goodness for his co-workers and wife!

      • #19680
         Colleen Steele 
        Keymaster

        @mamabear007 I truly believe that people come into our lives for a reason. It’s amazing how people who at first we think will just be casual acquaintances end up having a great impact on our lives. Thank God for your son’s caring and persistent co-workers! And yes, what a difference a good doctor can make!

        In regard to your son’s stubbornness, it’s kind of cute when they are little but then they grow up and it causes a mom to have sleepless nights. Am I right? But, at least he met his match in his wife. I’m glad he has her and I’m glad for you that he has her!

      • #19696
         Jen Cueva 
        Participant

        Yes, so true!

        The stubbornness is cute when the kids are young. As you mention, not so cute as they become young adults. HeHe

        I love that you mention about God placing people in our lives, Colleen. It’s often where and when we need them the most.

    • #19671
       Jen Cueva 
      Participant

      Thank you for sharing, @mamabear007. I hate to hear that this was how your son had to disclose his PH. I am happy to hear that his employer has been so understanding. Often, even with the ADA, some employers find ways to get rid of those with disabilities. That is heartbreaking!

      @colleensteele, think you for also sharing your son’s story. I am glad that as a young adult that you understand that it is up to him to share. I, tend to agree with him, but I also see your point as well.

      When I first was sick and trying to find out what was going on, I did not tell my employer. I worked in nursing, so they knew something was wrong. But, as long as possible, I made appts after work hours for a while. This did not last long as I needed up in the ER and that is ultimately how my employer learned more.

  • #19756
     Brittany Foster 
    Keymaster

    This was something that I ended up having to make the final decision about when I was a teacher. I honestly couldn’t have asked for a better, more supportive work environment to be a part of. Everyone was great. I let the school nurse know which was very important, I talked about it with my colleagues that I was working closely with and I was open about my condition when teachers would ask what was going on. It was a little more obvious for me after I was put on oxygen and people just “got it” without me even telling them much.

    Unfortunately I had to find a job with less hours and less physical strain on the body. being on my feet all day was really challenging and I didn’t have the small group setting that would allow me to sit down with my students. It was more of an inclusion model so my students I had on my case load were all spread out in the room.

    • #19921
       Jen Cueva 
      Participant

      Thanks for sharing, Brittany. I am pleased to hear that your colleagues were so supportive. The school nurse was a wonderful person to educate and inform in case you had an emergency.

      I’m sorry that you had to ultimately find new jobs. But, the physical strain is certainly tough.

      I’m grateful that we have you here with us. You’re such a huge part here offering your support and experiences.

      • #19932
         Brittany Foster 
        Keymaster

        I’m glad it led me on the right path and a good one for me! I feel like everything we do there is a purpose to it. It felt like the absolute worst thing in the world to put an end to my teaching career, but ultimately I think it led me to do what I was meant to. I definitely find tons of fulfillment in what I’m doing now, connecting with others, and sharing my personal stories through my columns too. I wouldn’t change it for anything!

  • #19941
     Jen Cueva 
    Participant

    Hi Britt, I am so happy that it lead you here. Your columns are awesome. I hope that it fulfills you as much as you inspire others.

    Often, I find that as our plans change, We often find ourselves right where we belong.

    • #19951
       Brittany Foster 
      Keymaster

      I’d really like to think so too, Jen ! My columns definitely help me a lot. Before all of this began, my PCP always told me that she could see me doing something online and writing. My therapist also said the same to me because I always had so much to say and before appointments I did a lot of writing that I would share with her in the sessions. Not only does it help others but it definitely helps me from a therapeutic standpoint. That’s the best part of it all ! It makes being vulnerable a lot easier when I know I have an audience of readers that really “get it”

      • #19959
         Jen Cueva 
        Participant

        Britt, I know so! You are right where you belong.

        Although, I haven’t been writing my column long, It certainly can be therapeutic for me , too. Prior to writing mine, I often wrote in my journal.

        It sure is easier when others “get it” and learn from reading what we share. You’re a role-model for us all. Thanks for all that you do.

      • #19969
         Brittany Foster 
        Keymaster

        You always make my day so much brighter ! Thank you for saying that. I know your columns are doing the same for others and will continue to inspire and encourage others to tap into their vulnerable sides. I can’t even tell you how much a weight is lifted off of me when I write some of the more emotional pieces. Just getting it out there and out in the open for others to read helps so much. It was honestly really difficult at first though. Did you ever blog on your own too?

      • #19990
         Jen Cueva 
        Participant

        Thanks, Brittany. You always brighten my days, so we are even.

        I certainly know that writing some of my experiences although tough is therapeutic. I did blog a few years ago. I was about to start it back up when y’all mentioned to me about the columns. Thanks to you and Colleen, both. I appreciate you both so much.

      • #19994
         Brittany Foster 
        Keymaster

        your columns really add such a great perspective on life with PH and you can tell that you are so positive and optimistic and really appreciate the things that you CAN do. I love reading them ! It’s so great that we have this community and can really be there for one another through the good and bad. That’s what it’s all about.

      • #20000
         Jen Cueva 
        Participant

        That means so much coming from you, Brittany. Thanks for your encouragement. As I say, ” I want to be like you, when I grow up”. Hehe –

        I’ve had some awesome support and understanding here in the forums from you all.

  • #20123
     Beverly 
    Participant

    So great to hear everyone’s experience, still waiting for an official yay or nay on diagnosis(This Friday!). So I just go about work like usual, take it easy. But just Like Brittany I am a teacher and do wonder if it comes back PH, how long can I last. This job is hard for people without health issues. I have to be mindful anyways because of the autoimmune issues.

    • #20128
       Jen Cueva 
      Participant

      Hi Beverly,
      I am happy to hear that you will finally have the heart cath this coming week. I am hoping that they can start you on the best treatments for you. Some are able to continue working once they start their treatments. I am sure that teaching can be emotionally and physically draining.I hope that you are able to rest on the weekends as I am sure your body needs it.

    • #20146
       Brittany Foster 
      Keymaster

      Hi Beverly,
      I had to be really mindful of my body when I was teaching and had to take the time to come up with modifications for MYSELF. It was hard to follow through with it including allowing myself to have permission to sit during lessons as much as possible, (not sure how old the kids are you have) but I gave the 8th graders I had more responsibilities so that they were doing a lot of the work for me and even chose “teachers” to write on the board on the days when I just felt like didnt have much energy to stand. Kids are very willing to help and if you’re making them seem like they have more responsibility they will be very receptive to it. I did have younger kids at first but it was just way too much for me so I chose a position in a higher grade where I could have them do more project based learning and it was pretty much student directed and I did more monitoring.

      • #20151
         Jen Cueva 
        Participant

        Great tips, Brittany! I am sure that older students can be helpful. I recently met an 8th-grade teacher who has Leukemia and he said the same thing. He went from teaching Elementary school to Junior High and this has helped him some. He was still exhausted mentally and physically after the workday. I suggested he rest when he can. He was doing tons of volunteer work as well and not taking time for himself to rest.

        I will screenshot this to share with him if that is OK. Thanks for sharing.

      • #20154
         Brittany Foster 
        Keymaster

        Absolutely ! That is fine that you share this information from me with him. It definitely is still exhausting especially because teacher’s work days don’t end when they get home and we put in a lot of hours AFTER the hours of the school day. As much as we love our vacation time and our weekends I feel like when I was a teacher the work just never stopped. I tried to take as “laid back” a role as possible but honestly everything in the school department is hard work and requires a lot of mental energy which was harder for me than the physical energy ! I eventually had to stop because it was just getting to be too much and I was getting very sick and catching EVERYTHING. My immune system took a real hit.

  • #20556
     VK 
    Participant

    Thanks for this article!

    I didn’t get anywhere near discussing illness during my job interview, and after about a year of work in excellent standing I still haven’t talked about it much, aside from a small advocacy poster in my cubicle and telling co-workers I have “a significant lung disease” when I cough for hours on end.

    In my case the only limitation is social, because I really don’t want to depress other people by informing them that I have a disorder, which at my severity, is incompatible with a normal lifespan…

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