This topic contains 16 replies, has 5 voices, and was last updated by  Brittany Foster 1 month, 1 week ago.

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  • #19661
     Colleen Steele 
    Keymaster

    A PH diagnosis affects not just the patient, but also their family. It’s so emotional having to explain to your PH child what it is they have and how it’s going to affect their life, but then if you have other children you need to do the same with them. It isn’t easy, especially when you have age differences to consider. You want to protect your children from emotional trauma but they also need honesty and conversation so that they can understand what is going on.

    My son had PH and his brother who is 13 months younger than him, was healthy. I realize now that they are both young men, that I did some things well and others I could have done better. In my column a few weeks ago I wrote about this experience and shared some advice.

    How do you approach difficult conversations about PH with your other child/children? How has PH affected their life? Share you experience and advice with other parents going through the same challenge.

    The ‘Healthy’ Sibling’s Struggles with PH

  • #19670
     Jen Cueva 
    Participant

    Colleen, I am thankful that my PH started as an adult. I still understand that my sisters also are affected, although we are adults.

    But, when you have a PH kid and a “ healthy” kid, especially that close in age, must’ve extremely tough. Although, it appears that you did one amazing job at raising them both.

    I can imagine that the hospital visits, testing, and emergencies were quite scary for your “healthy” son. As you mention, missing days of school,I am sure at a young age,this was hard to explain to him.

    Despite the struggles, I am glad to hear how close your sons are. I am sure this is also a huge part of the ways you and your husband approached things. I have heard some PH parents discuss sibling rivalry with jealousy, quite often. Other times, I have been filled with joy listening to the compassion and support of other siblings.

    • #19681
       Colleen Steele 
      Keymaster

      Thank you, Jen. Oh they had their share of jealousy and rivalry, to the point that I wasn’t sure they would ever be good friends. However, even when they were little, there were hints of how much they cared about each other. Picking on each other was one thing but if they caught someone else doing that there would be a problem.

      Now, although they still enjoy teasing each other, they are super close. It’s a friendship that I dreamed about them having. It makes me so happy, it really does.

      Thank you, Jen, for your kind words. I appreciate them.

      • #19694
         Jen Cueva 
        Participant

        LOL @colleensteele, you would be nervous if they didn’t pick on each other, right?

        I’m glad that they do have that tight bond despite the picking. It’s all in fun. Well, and to drive Mom crazy, right?

      • #19706
         Jen Cueva 
        Participant

        Colleen, I didn’t realize that you’re an only child. If I did, I forgot, LOL

        As you know, my daughter is an only child. Well, if you don’t count her ” sister”, Sasha, our mini schnauzer. Haha

        I love learning about not only our struggles and achievements but our backgrounds as well.

  • #19683
     Margie Novak 
    Participant

    Hello all…. I could not ask for better siblings with regard to my PH! I have a sister who is a pharmacist and works at a well known hospital in Philadelphia and every time I have been admitted to the hospital for PH she has stayed with me — day and night! It is so helpful so that when the doctors came in (and they make early rounds) she was there to question them about EVERYTHING and give the explanation in “plain terms” when they left (sometimes doctors talk about my head!!) I have another sister who is a nurse and when I was in the hospital for Afib I had to stay with her for 3 months and be on a very low salt diet. She bought cookbooks and cook with very little salt so that in 3 months I had lost most of my water weight.

    • #19746
       Brittany Foster 
      Keymaster

      Margie,
      This is so awesome to read about all the support your siblings are giving you. I am sure you are a huge part of their life and they are all going to do what they can to have you around for a really long time! It helps when some in your family are medical professionals too. This was always helpful when one of my aunts who knew the majority of the doctors and medical team. When they see a familiar face it helps too !

  • #19684
     Margie Novak 
    Participant

    Sorry this is a continuation… my youngest sister lives with me and does my grocery shopping and takes me to doctors appointments. Plus two other siblings who keep me in their prayers and when I was in Afib rushed from their homes to see me in the hospital. I cannot say enough about how my siblings have kept me alive and fighting this horrendous illness for 12 plus years. When I am down, they give me hope that I may not offer much in the way of doing physical things but I bright spot to their day and am there to hear about there families. Hang in their PH friends…. I know I am saying a lot but I am truly blessed…. take care

    • #19695
       Jen Cueva 
      Participant

      Hi Margie,
      Can I be adopted into your family? Just kidding! But, it sounds like your siblings offer the support you need and then some. That’s amazing!

      Having such a supportive and educated team certainly makes things less stressful, I’m sure. I could feel the love that y’all share as I read your comments. I’m sure that your siblings enjoy doing these things for you. Probably, even more, than you can imagine.

      What a blessing! I’m so happy for you, thanks for sharing.

    • #19701
       Colleen Steele 
      Keymaster

      Margie, you have really been blessed with an amazing family! I love hearing about close knit families like yours. I was an only child and never liked it. I always envied those with a big family like yours. That’s why it’s so important to me that my boys are close. I’ve always prayed for that to be the case.

      By the way, I was born and raised in South Jersey right over the bridge from Philly. My dad was born and raised in Philly. My parents still live in Jersey but I’m in WA state now.

  • #19745
     Brittany Foster 
    Keymaster

    My siblings have all been really great with talking about my health. I have a sister who is 17 months younger than me and one that is almost 5 years younger than me. The one that is the youngest has a lot of independence and is very much focused on her own life. She does hang out with me a lot and used to live with my boyfriend and I when we were in our first apartment. We are all very close.

    My middle sister who is closer to age with me knows the support that I need. I know that she is concerned when I go into hospitals and have surgeries and she is very much aware that things can change really quickly for me. She has even mentioned this to others when they have brought up my health or have talked about it. She is a lot more open to talking about things than she used to be and is wanting to be more involved. She took me to a few appointments so I think she just “got it” after hearing things right from the doctors. Sometimes that helps a lot too to educate those who may possibly have a lot of feelings of denial.

  • #19754
     V.R. Peterson 
    Participant

    Thank you for the article, @colleensteele. I’m not sure how I would have dealt with it if my son had been diagnosed as a child. Because they were all adults when my youngest was diagnosed with PH (and later with CTEPH), I explained it without cutting any punches. When my son went to California for his PTE surgery, my oldest (who lives in CA), came to the hospital for several visits. My middle child lives in TN, and she’ll call her brother occasionally, but mostly she too busy trying to manage a household with a husband, three children, and three dogs.

    • #19757
       Brittany Foster 
      Keymaster

      I’m glad that your son had his brother there for support when he was in California. It must have made things easier. having visitors in the hospital really helps bring some more life back into the room and doesn’t make it feel as miserable and gloomy. Is he still living in California now?

      It’s hard when siblings live far away and I’m sure that his sister was doing all she could to show her support from miles away with her own family!

      • #19771
         V.R. Peterson 
        Participant

        The oldest is still living in California. My youngest (the one with CTEPH) is back in Utah. He has to occasionally travel back to California for more procedures; while the PTE surgery saved his life, it didn’t cure him because many of his clots were distal (in the tiny ends of the pulmonary arteries). UCSD can only do two BPA (Balloon Pulmonary Angioplasty) procedures within a week’s timeframe, and he will likely need two or three more sessions. I expect that each time he has to go back to CA, my oldest son will visit him during the week he’s there.

      • #19778
         Brittany Foster 
        Keymaster

        That really is great that his brother is there for him when he goes to California for his care. How often does he have to travel to go there? Does he drive or fly a plane? I apologize for all the questions, just curious if he has any travel restrictions with flying ?

      • #19793
         V.R. Peterson 
        Participant

        The frequency depends on the results of his echo and VQ scan. He had his first two BPAs in April. He got those tests again a little over a month ago, and he expects that he’ll hear from UCSD in about another month. He’s hoping he doesn’t need to go back. My research (including that done by UCSD) indicates that a person getting BPA procedures will typically need from 4 – 8 procedures (done two each time).

        While my son and his wife drive to CA for the surgery, his health is much better, so he flew for the first two BPA procedures. There are no travel restrictions when he flies. Even though he still technically has PH, it’s no longer severe enough to require oxygen, even when flying.

        No apologies necessary for the questions. Learning about the PH journeys of others helps us with our own journeys (or in my case, helps me to understand my son’s journey). I can’t even begin to express how hearing the experiences of others has helped me to understand my son’s trials. I appreciate everybody here more than words can express.

      • #19799
         Brittany Foster 
        Keymaster

        I’m so glad that these forums are helping you so much to understand other’s journeys and hear about what it is the patients go through too along with other caregivers. I’m sure you feel less alone with your thoughts and trying to understand things the best you can. This really is a great resource. That’s great that he can travel too and spend some time with his sibling and also be able to fly on the plane without oxygen. So many hoops have to be jumped through when flying with oxygen!

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