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What Are Your PH Related Family Struggles At The Moment?

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    • #26380
      Colleen Steele
      Keymaster

      It is inevitable that when you are diagnosed with PH it’s going to affect your family one way or another. My son no longer has PH but post-transplant life effects the whole family too.

      We have 4 adults in our family and for the past several week’s we were down to one car. It was a very inconvenient time to have issues with our 2nd car because my son is in the middle of first appointment visits with is new adult team. It’s been a juggle trying to get everyone where they need to be. We ended up renting a car for a few days. This is a minor example of family struggle when illness is involved. We have faced much bigger challenges over the years.

      Whether a big or small issue, in what way is PH affecting you family at the moment?

    • #26409
      Jen Cueva
      Moderator

      Oh no, @colleensteele! I am sorry to hear that you and your family are down to one car. That has to be a struggle. I hope that this week will be better for y’all. I can see how with 4 adults, one car would be challenging!

      This is an important topic. The patients are sick, but the families also deal with many struggles when a loved one has PH. My hubby has been having a difficult time since my last hospitalization. I hate this as he stresses so much. Ironically, my next column may is similar to this topic.

      As I always say, PH turns the families’ world upside down at times. It can certainly be challenging. What are your plans to work on this? You mention that y’all may rent a car. Is the other car broken down? I am so sorry and hope that things improve this week. I can only imagine how you all are running around like crazy trying to get everyone where they need to be.

    • #26424
      Colleen Steele
      Keymaster

      @jenc I’ve kept your husband in my prayers as well because I figured he has been so worried about you. I’m not saying that to make you feel bad. Those who love you worry, that is what we do. I know you have worried about your hubby as well. I’m just glad you have each other, and your daughter too!

      No, it hasn’t been easy living with one car. Aidan bought a car last week so that has helped eliminate the worry about him getting to school and work. We don’t have a very reliable car to begin with and then the brakes went on it. Aidan went to replace them and discovered the axles need to be replaced. He’s hoping to have the repairs done before Friday – which is the day of Cullen’s next Seattle appointment. I rented a car for his appointment today. Just doing what we gotta do to function.

    • #26472
      Jen Cueva
      Moderator

      Thank you, @colleensteele, for your continued thoughts and prayers. Yes, they both worry and my mom, too.

      I am happy to hear that Aidan bought a car. I knew that you had mentioned before that the vehicles were not in tip-top shape. I know that it is costly. I am grateful that my hubby can work on his truck and the Jeep. His truck is 2002, lol I keep telling him that it is a classic. Like Manny, I am happy that Aidan can work on your vehicles. The amount the garages charge for labor is insane to me.

      Take care of yourself, and I know easier said than done, but try not to worry. As you always do, you find a solution. Renting a car is what it took, so you did that. You are such an amazing friend and person in general.

    • #26473
      Jen Cueva
      Moderator

      Thank you, @colleensteele, for your continued thoughts and prayers. Yes, they both worry and my mom, too.

      I am happy to hear that Aidan bought a car. I knew that you had mentioned before that the vehicles were not in tip-top shape. I know that it is costly. I am grateful that my hubby can work on his truck and the Jeep. His truck is 2002, lol I keep telling him that it is a classic. Like Manny, I am happy that Aidan can work on your vehicles. The amount the garages charge for labor is insane to me.

      Take care of yourself, and I know easier said than done, but try not to worry. As you always do, you find a solution. Renting a car is what it took, so you did that. You are such an amazing friend and person in general.

    • #26499
      Colleen Steele
      Keymaster

      Thank you @jenc. I have mutual admiration for you! You are a good friend to me.

      It is a big money saver having Aidan work on our cars. I feel bad expecting his help with it sometimes because he works so hard at school and then the dealership every day. I hate asking him to work on the car when he gets home but he’s always happy to help. I’m blessed with good kids. I know you feel the same about your daughter.

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