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    • #29741
      Colleen Steele
      Keymaster

        In this week’s column I interviewed my husband in honor of “Husband Appreciation Day” on April 17th.

        As most of you know, our son had PH and received a transplant. Little did we know that our vows, “…in sickness and in health” would be challenged, and strengthened, by our child.

        We have had to spend a lot of time apart, especially during transplant recovery but also during long hospital stays throughout Cullen’s PH days.

        My husband shares what it has been like for him and what he feels has helped our marriage survive the ups and downs.

        I hope you will take a moment to read the column and share your thoughts and experience. Maybe some of the men in our forums will like to share their insight about PH and marriage too.

      • #29763
        Jen Cueva
        Keymaster

          Awesome column, @colleensteele! I enjoyed the perspectives that Brian shared. It had to be a constant tug on your relationship. But y’all did it and an awesome job at that! You have raised 2 amazing young men, and your love shows through in so many ways.

          I love the pics, such a beautiful bride, too. Of course, you are still beautiful.

          It’s no secret how much I appreciate my hubby, Manny. He is my Rock and my air when I cannot breathe. He had had to advocate for me when I was unable. He has have been at my side through this, 16 plus years now with PH and my other health issues. It is constant teamwork, but he puts in the most work but never complains.

          It truly is a rollercoaster. I agree with Brian. Never a dull moment, and only the strongest marriages survive things such as PH and transplant. Sadly, not all make it.

          Happy early anniversary to you and Brian. Tell him he did amazing. I love ya, Colleen.

          PS, I never knew there was a Husband Appreciation Day. <3

        • #29765
          Colleen Steele
          Keymaster

            @jenc I didn’t know about “Husband Appreciation Day” either. I discovered it through Brad’s list.

            • #29782
              Jen Cueva
              Keymaster

                That is where I thought you saw it but wasn’t sure. Some people know and report some special day each day of the year, it seems. Some of the ones on Brad’s calendar, I question myself why I have not heard of these. lol.

                I am grateful to hear your stories about your husband. Brad, @s-steppins. It certainly helps when dealing with such an overwhelming rare disease. We are blessed to have the good guys. Thanks for sharing. Showing appreciation is so important, too.

                That is funny; as I am typing, my hubby, Manny, just filled my tea glass because he noticed it was empty. Those little things are the big things.

                Enjoy your weekend, ladies.

            • #29770
              Susi Steppins
              Participant

                Wow @colleensteele.
                What a great article.
                It makes my heart feel good to hear stories of such strong bonds between a couple.
                Thank you for sharing that article.
                Brian sounds like a wonderful person.

                I very much appreciate my husband Brad.
                He has always been there for me, but since my diagnosis he has been everything to me.
                He always puts my needs before his own and every day is spent with him making sure I am comfortable and that I have anything I might need.
                He drops anything immediately if there is something I have to have and he has spent many hours just watching me to make sure I am okay, (trouble breathing, afib episodes, medication side effects, etc.)
                He has taken on the burden of having to provide for our family alone.
                Yet I never hear him complaining about it.
                I try to make sure that I tell him at least once a day how much I love him and how very much I appreciate him.

                Thank you Colleen for pointing out that Saturday is Husband appreciation Day.
                I will celebrate it with him, for him.


                @jenc
                , your husband sounds like one of the good guys.
                I feel lucky to have one of the good guys as well.

              • #29791
                Colleen Steele
                Keymaster

                  @s-steppins thank you for reading the column and I will let my hubby know you appreciated his responses. I enjoy hearing about your husband too. Brad, Brian and Manny are definitely keepers! Have a great weekend and enjoy “Husband Appreciation Day!”

                • #37138
                  Jen Cueva
                  Keymaster

                    Tomorrow, January 26, is National Spouses Day. This is a day when we can show our appreciation to our partners. Unlike Valentine’s Day, no gifts are needed except the gift of time.

                    Maybe I’ll make a special dinner that Manny enjoys or watch a movie of his choice. A few other ideas are to do a task you know your partner would appreciate or play a game they enjoy.

                    How will you show appreciation to your partner tomorrow(1/26)?

                    • #37143
                      Colleen Steele
                      Keymaster

                        @jenc I did not know that tomorrow is National Spouses Day. As you know, my husband’s health isn’t the best and I turned our dining room into his care center. It needs reorganizing to make it more efficient and comfortable for him. I will plan on doing that for him tomorrow.

                        • #37150
                          Jen Cueva
                          Keymaster

                            Hi @colleensteele, I love the idea that you are working on reorganizing the dining room/Brian’s space to make it more comfortable for him. He must be so appreciative to have such an excellent caregiver and wife.

                            I hate that his health has been declining. I continue to keep you both in my prayers.

                            Now, don’t be pulling and moving furniture around and get yourself worn down, either. You need to be in your best health to help care for him. I could help if I were closer. 😉

                          • #37153
                            Jill Upshaw
                            Participant

                              That is so good. Making it easier for the ones we love and who so often take care of us at their expense is such a good thing. I tried to get my aunt to do that many years ago and she refused. Now she is 95 in a huge house but the dining room is now her bedroom. Her kids just started moving things out without her agreement and it is so much better on her. The kitchen and a full bathroom are just a few feet away. Houses are meant to be homes and as needs change, we all need to rethink what is best.

                            • #37161
                              Jen Cueva
                              Keymaster

                                Hi @upshtcx, you make an interesting comment that my late boss told me when I first was sick and awaiting a diagnosis. She told me a house is meant to be lived in. It shouldn’t matter if it’s messy; it shows it’s a well-lived home.

                                This was after she wanted to stop by, and I was telling her my house was a mess. It was when I was living mostly;y downstairs in our living room and half bath because I only crawled up the stairs at night to sleep and shower.

                                Before PH, I was a tad OCD, and my home was always spotless, and friends would comment how clean and fresh it was. That is far from today when I like a clean house, but I think back and remind myself it’s a home, not an art museum.

                                My late Mawmaw didn’t want her stuff, including her hospital bed in the front of the house. But once she became bedbound, we talked her into doing it. She could be in the center of the living room, which has a huge row of windows, and she could see anytime people were pulling in to visit. She could also be a part of the kitchen conversation since it was a semi-open floor plan.

                                However, through the years, we often had to rearrange things and clear her clutter out, making it more comfortable. Like your aunt, she was reluctant at first. Once her dementia set in, she would fight us over tossing out old newspapers and magazines she had hoarded through the years.

                                Did your aunt fight the kids, or did she realize this was a better set up for her comfort?

                              • #37162
                                Jen Cueva
                                Keymaster

                                  Hi @colleensteele, did you find the time and energy to rearrange and organize Brian’s care area yesterday? How is he doing this week?

                                  I made dinner for Manny last night. It was simple; he wanted tuna noodle casserole. I make it with whole grain pasta, albacore tuna, low sodium cream of mushroom, and frozen petite peas. Of course, cheese and other seasonings. He enjoyed that and a side salad.

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