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    • #29587
      Colleen Steele
      Keymaster

      We are a few week’s behind checking-on on weekly wins. How is everyone doing? Any progress you would like to tell us about, and it doesn’t have to be medically related.

    • #29600
      Jen Cueva
      Keymaster

      Thanks, @colleensteele; I love how you brought this back to our focus. We too often think of the bad days, but we must celebrate our wins, too. These little wins add up to big wins, and we all need this.

      My weekly win was making it see my stepfather and being there with him and moma when he took his last breath. More on this in an upcoming column, but that trip and added stress took a toll on me physically, mentally, and emotionally. But I would not trade it for anything.

      That and being home and now back with y’all in the PH forums is a huge win for me.

    • #29652
      Dawn
      Participant

      Hi @colleensteele and @jenc. My weekly win has been facing and dealing with a slip in my depression, that I think has been building up for awhile. I have these slips every now and then, but they are nothing like they used to be and I’m able to get past them much quicker than I used to. My other win, which I mentioned in another reply to @colleensteele, is seeing a tremendous improvement in pain levels thanks to some physical therapy I’m getting for my arthritic knees.

      Jen, my mom was in hospice before she passed. I, and one of the hospice staff, was with her when she took that last breath. Like you mentioned, it was draining in I think every way possible but I was so glad I was there with her. I’m sorry for your loss.

      • #29676
        Colleen Steele
        Keymaster

        @dawnt I know you are going through a lot emotionally and physically, but it is good to hear you acknowledging and working through it the way you are. Have you been able to work with and enjoy your horses?

    • #29663
      Jen Cueva
      Keymaster

      Hi @dawnt, I am sorry about your slip into depression. I can only imagine how that must be for you. I am grateful that you can share about this and hopefully receive support from our members.

      Despite trying hard to push through, I think that the chaos in the world does not help at all. My anxiety has been higher than usual; I keep feeling that makes me a failure. But then I remind myself of other times this has been a struggle and that I survived, helps me along the way.

      The help to decrease some of your pain should help. I am grateful to know that PT is helpful. How often are you going? Was it 2 x per week?

      Please keep us updated. Even if you find yourself slipping, pop in and at least chat with some of us. We worry and care about y’all.

      WTG and keeping winning…

    • #29667
      Dawn
      Participant

      Hi Jen. I’ve been doing physical therapy 3x a week for the past two weeks. My pt, at my request, emailed me all the exercises/details, and I’m going to do them at home this coming week. I want to be sure I can maintain/improve the progress I’ve seen on my own. I’ll check in via phone with my pt this coming Friday, and decide if I feel I need more physical therapy or if I’m good on my own. Stretches help alot, building up strength in muscles above/below/around the knee help greatly too – but that takes longer to achieve.

      That feeling of being a failure that you mention, Jen, tends to be an issue for me as well. That is usually what triggers a slip with the depression for me. The slips are pretty infrequent, and don’t last as long as they used to, but I can be more brutal with myself than I ever would be with anyone else when they happen. That self talk makes a huge difference. I look at my worst times with my depression, and where I have been now for quite a long while, and I know deep down that I am not a failure. I know, Jen, without a doubt, that you are not a failure either. Everyone on this site, dealing with ph and other issues, as a patient or caregiver, is not at all a failure. Everyone, not just those on this site, is just trying to get through life the best they can. Whatever the ups & downs may be, the fact that we keep going and give ourselves the best life we can totally means there are no failures here.

    • #29669
      Jen Cueva
      Keymaster

      Good morning, @dawnt. I appreciate your support and kind words. I was referring to when I take more anxiety meds; it makes me feel like a failure, but it helps. So I am certain you can relate to that part, too.

      I am hopeful for you and your PT exercises. It is great that you have already seen improvements. That in itself would be enough to keep me going. I am proud of you. Not only have you lifted yourself out of a depression session. But, you are also working hard at PT to get your knees stronger.

      I love this part in your message above, “Everyone, not just those on this site, is just trying to get through life the best they can. Whatever the ups & downs may be, the fact that we keep going and give ourselves the best life we can totally means there are no failures here”

      I am grateful to you, and I know the others here are, too. Please don’t go MIA for long.

    • #29679
      Dawn
      Participant

      Hi, Colleen. I have been going to the farm, although my knees had me getting around really slowly. I’m getting around better, feel sure I’ll be able to do better as I continue with the pt exercises. Since I have bone on bone arthritis in my knee (probably both), I won’t ever be totally pain free but even the reduction in pain I’ve had so far has been such a relief. It would take a lot to keep me from ‘my’ horses! They don’t care how slow I might be, as long as I can groom and give treats, and that I can do!

    • #29695
      Jen Cueva
      Keymaster

      Hi @dawnt, I love that you are continuing to work with your horses. I know how important that is for you. Ouch, bone pain is the worst, so I am happy that you are getting some relief.

      Is the PT helping the pain, or do you have to take pain meds, too? Either way, decreasing the pain is what is important.

      I love this part, “it would take a lot to keep me from ‘my’ horses! They don’t care how slow I might be, as long as I can groom and give treats, and that I can do!”-

      That statement makes me smile and my heart happy. Keep enjoying your horses and go at your own pace. Thanks for sharing, Dawn. I am sending you big hugs from Texas.

    • #29772
      Randolph Reynolds
      Participant

      Colleen
      I’m checking in since it has been a while. My wife had a knee replacement two and a half weeks ago. This was very problematic for me as my condition limits me on doing much of what she did both around the house and getting out to her volunteer work. Fortunately our daughter came and spend twelve days with us and basically took over. Now that she is gone and my wife is recovering very well the load on me has been less than I expected. But saying that doesn’t mean it is easy, on the contrary being on supplemental oxygen hinders my efforts as one might expect. It has been hard but I have managed to drive myself now that I have to drive her to therapy or shopping it takes some manipulation of the oxygen tank(s). So in a sense we are winning this battle. Like Jen, I do have to take anxiety meds or the emotional impediments creep in.

      BTW the Association keeps putting out requests to take a survey. I tried twice but at the end when I submitted the survey locked up and read that I needed to provide an email address. Perhaps others are succeeding with this.

      Randy

      • #29788
        Colleen Steele
        Keymaster

        @ripple76 it’s nice to hear from you. You and your wife sound like a lovely couple who do their best to take care of each other. I’m glad her recovery from knee replacement surgery is going well. I’ve heard it’s worth it if you can manage through the surgery and recover without issues.

        Re: Your question about the survey. Is it with PH News or the PH Association. Can you provide a link to the survey you are trying to participate in? I was told if it is for PH News they don’t require you to provide an email address.

        I have a question for you that I sent in a direct message if you can read that when you get a chance. My email if you need it is [email protected]

    • #29773
      Dawn
      Participant

      Hi Jen,
      The pt has helped quite a bit with the knee pain, but it won’t take it totally away. I’ve only ever taken over the counter pain relievers, and I use icy-hot and a roll on 4% lidocaine pain reliever when I go to the farm or am doing yard work etc. I also started using heat on my knees before I do something I know is going to make me sore, then ice afterward. I learned that from pt as well, so it’s been a good thing. Even when I had my first pulmonary embolism, the doctor said no being around horses for the initial year I was on warfarin. I told him I wouldn’t do that. I was just extra careful, and like most animals the horses seemed to know to be more gentle with me. Same as now.
      Hope you’re feeling better every day, Jen. Your husband too. Take care.

    • #29777
      Terry
      Participant

      G’Day All you lucky PH sufferers. Well today I had to take the boss to the hospital for X-rays on her broken wrist and nose from the fall she had in a car park because of those blasted masks fogging up her glasses a couple of weeks ago.
      Anyway the good news was the bones in the wrist all lined up so they just put a new cast on for a further four weeks and as she has bad HHT nosebleeds and the nose was straight they decided to leave it alone.
      The bad news was I parked in the wrong car park for a couple of old hacks and to get back to the car we had to walk up a ,what was to me, bloody great hill in 30c heat . Nine months ago I would have been calling a cab for the 50 metre hill climb or taking half a day. Today I was more concerned about helping the boss up and did it without thinking ,well perhaps a little puffing at the top .
      That was a huge win for me and it did not go unnoticed by the boss.
      Thank You modern drugs oh and those ready made meals you buy at the supermarket as I’m now temporarily chief cook and bottle washer…NOT.

      • #29792
        Colleen Steele
        Keymaster

        @terry I so enjoy your sense of humor and the descriptive way you share with us in the forums. I can just picture the both of you walking back to your car. You sound like an amazing couple.

    • #29796
      Terry
      Participant

      G’Day Colleen, Na nothing amazing just two normal oldies who as every year passes appreciate each other more even though we blue every now and then . Thats my story and I’m sticking to it even though she kicked me out of the marital bed to a spare room a few years back.

      • #29797
        Colleen Steele
        Keymaster

        @terry well, I like the way you share your story. I would love to interview you both via email for a column if you are ever interested. If so email me at [email protected]

        • #29816
          Terry
          Participant

          G’Day Colleen ,
          Thanks for offer mate but could not cope with pappa.. pap… you know nosey journos. hiding behind trees taking photos once public.

    • #29801
      Jen Cueva
      Keymaster

      G’Day @terry, I so love reading your stories. I hope and pray that you and your wife are coping as she recovers. I can only imagine how much fun the two of you have. Thanks for sharing.


      @dawnt
      , I am happy that PT is helping you. I also figured that it would not keep you away from your horses. You help them while also being therapeutic for you. I hope that the PT continues to help.

    • #29840
      Jill Upshaw
      Participant

      I don’t share a lot because most of my experiences are usually bad. My lab is bad. My echoes are bad. My body is not responding to my meds. I am very weak. You name it. BUT this week was different in a big way. For nearly 2 years everything has progressively gotten worse no matter what. My pressures decreased this week to 45-50 from the 90’s and my ejection fraction came up quite a bit also. My echo was much improved to the point that my cardiologist thought he had the wrong result. He was shocked and so was I. I have been on Adempas for several months and apparently, it is working. My chest X-ray is also greatly improved. Still on 4L BNC and everyone involved seems to think that is helping a lot also. I felt stronger this week.

      • #29842
        Colleen Steele
        Keymaster

        @upshtcx I honestly teared up reading your update. Oh my gosh, I am so happy for you that you are finally seeing substantial improvement. Good for you for sticking with the Adempas because it sounds like patience payed off. It does take months for some people to respond to treatments. You were very sick and maybe that is why it took a while to see change.

        Please, don’t hold back when things aren’t good. That is when you might need us most. No pressure to post but if you want to don’t ever feel like you shouldn’t.

    • #29841
      Randolph Reynolds
      Participant

      Jill
      Your echocardiogram results are amazing. Which WHO group are you in? I am in 4 which is chronic thromboembolic pulmonary hypertension (CTEPH). I have been on Adempas for over six years and started with Remodulin three years ago. What I pray for is that I can get off oxygen therapy one day.
      Any little improvement is quite a milestone for me. That is important. News like this is definitely a win. I’m surprised your cardiologist didn’t get you on Adempas sooner.
      Like all of us with this disease we share a common burden.

      Randy

    • #29843
      Jill Upshaw
      Participant

      Thank you, Colleen. I was almost hysterical. The cardiologist kept reading and making faces. The person that did the echo kept redoing parts of it. I knew something was different but I assumed bad. I finally told my cardiologist to quit making faces and just tell me. He said I can’t believe this is your echo…….I really like and trust him. Randy, I am also 4 and when I was diagnosed, I was in CHF with labored breathing and blue. My regular doctors kept telling me to lose weight and exercise. I changed doctors and finally got some help. He tried the lesser drugs first while determining which kind it was. I really have a complicated history and they felt it could be from several things. It took time to determine the primary cause. I hate the oxygen but seeing such an improvement made me know I need to take it slow and easy and the O2 is part of that. I feel thankful.

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