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  • Brittany, I always thought the joint pain was the outcome of wild younger years but was a combination of osteoarthritis and rheumatoid arthritis (Some of which could be attributed to the above). Once this became pronounced my diagnoses went to the PH Group 3 which is part of the autoimmune disorder or connective tissue disorder. I was involved…[Read more]

  • My breathing issues about 5 1/2 years ago and was diagnosed with ILD. I was also having some minor bouts with my joints which was attributed to arthritis. Thinking back now I do remember having slight shortness of breath when I would be doing my daily routine, like walking and things. It was about 2 years later when I was at an appointment with my…[Read more]

  • Bill Jones posted a new activity comment 2 weeks, 3 days ago

    Cindy all I got to say is you just keep going. Your energy is almost contagious. I wish I could do at least half of the things I used to be able to do and someday hopefully will. Your story is so enlightening to the fact there is always hope. You keep going string. I’m rooting for you!
      • Thank you for the compliment. Your support is appreciated. I wish you the best in your journey. I have learned that there is definitely always hope. Thank you
      • Thank you Colleen. That may be of some help down the road. Right now just trying to grasp where we are and where we are going I guess. But it isn’t totally a done deal. I still to get excepted into the program. more of the hurry up and wait. Thanks again, your offer is very much appreciated.

      • My team has concluded that my last option is to have a double lung transplant. We had gone to Mayo and they confirmed it as well. The pulmonary fibrosis has just left too much scaring which is the leading problem.

      • Colleen funny that you mentioned the issue with your son sometimes finding it difficult just getting up and walking to the bathroom. That is me everyday. Once I get there I sit on the edge of the Jacuzzi tub to regain my breath before starting my routine. Sometimes I just wash up, shave, brush my teeth, brush my hair and get dressed with a…[Read more]

      • Bill Jones posted a new activity comment 1 month, 1 week ago

        Jen I am in agreement with you about the stigma of being bound to a wheelchair. At first was embarrassed a little by it but then realized it gave me freedom to get out without the feeling that I was fighting for air all the time, then doing nothing and going nowhere. As for stepping back a little from the business, it was time for myself…

        [Read more]

      • Bill Jones posted a new activity comment 1 month, 1 week ago

        Thank you Colleen. I do agree now that the wheelchair enabled me to get out more and enjoy the outdoors. I am hopeful for a successful transplant so I can park the wheelchair. I am sure your son enjoys being out of it as well.
        • Hi Jen, yes the walks are so needed right now with the COVID scare. The wheelchair is all new to me since January. Previously we would just use the wheelchair service going through airports as I still traveled for business and leisure a lot. when we were in at our home in Florida over in January, I had a business meeting in Dallas for a few days…[Read more]

        • Hi Jen. My wife and I still have our dates, probably even more so now just for something to do. It helps that I am working from home and not full days. Lately we go for a walk every day. I really don’t walk much because I am not able to, but she pushes me in my wheelchair and will cover about 3 to 4 miles. We have found some nice trails that…[Read more]

        • I was tested a few weeks ago when I was at Mayo. Not because I was sick but all patients were tested within the first 24 hours of arriving. I was negative as well thank God. It isn’t all that bad of a test like many had said or I was just fortunate to get the well experienced nurse.

        • Bill Jones posted a new activity comment 1 month, 2 weeks ago

          Thank you Jen. Yes it hasn’t been easy but have gotten this far. The transplant was always something we figured we could look into and see if it would be a likely possibility. We thought at that point we would look at the statistics of life expectancy for someone my age and other factors we could weigh out the pros and cons. Well at this…

          [Read more]

          • Oh, Bill, my thoughts are with you. It sounds like you are at that point. I am hopeful that UW Madison will offer some answers for you. You know, I, too, have always said that if and when the time comes for transplant, we would weigh the pros and cons. Like you, I think once I am there, there would only be one choice.

            I cannot imagine how…

            [Read more]

        • Bill Jones posted a new activity comment 1 month, 2 weeks ago

          I am on a multitude of different meds. I did do a clinical trial with the inhaled Tyvaso but after almost a year we realized it was not working and possibly made things worse with my breathing. Besides the PH I have an interstitial lung disease, and also RA. What I have been told is it all from an autoimmune issue so am on immune…

          [Read more]

          • @bill-jones, it sounds like you have quite a lot to deal with. I understand that it can be difficult dealing with PH and other coexisting illnesses. Coping with the interstitial lung disease and RA with PH, it sounds like this can be challenging for you. I am sorry to hear that you are waiting for a transplant. @colleensteele has been…

            [Read more]

            • Thank you Jen. Yes it hasn’t been easy but have gotten this far. The transplant was always something we figured we could look into and see if it would be a likely possibility. We thought at that point we would look at the statistics of life expectancy for someone my age and other factors we could weigh out the pros and cons. Well at this…

              [Read more]

              • Oh, Bill, my thoughts are with you. It sounds like you are at that point. I am hopeful that UW Madison will offer some answers for you. You know, I, too, have always said that if and when the time comes for transplant, we would weigh the pros and cons. Like you, I think once I am there, there would only be one choice.

                I cannot imagine how…

                [Read more]

        • Bill Jones replied to the topic Welcome Bill! in the forum Welcome! 1 month, 3 weeks ago

          Welcome Bill, You have found a great support team here. These ladies can be so helpful as well as offer an ear when you need one. Jen had recommended possibly utilizing Mayo with you living so close. I agree with her. I was there all last week for a complete evaluation and am very impressed with them and the facility. I do think you will get the…[Read more]

        • Dear Brittany,
          I just read that you have had a rough week. I offer my prayers for fast recovery for you and hope to see you back on line offering insights for all. Hoping for a complete recovery.

        • Good morning Jen. I haven’t been doing to well the last few months. My oxygen requirements seem to be needing more. This week we have been at the Mayo Clinic in Rochester, MN for an assessment and my wife and I both miss our good friend Linda. It is great when you have such a connection with someone involved with your care. Linda is waiting to…[Read more]

        • I have had some great nurses in my time but there is one that will always be in my mind. She was the coordinator at St. Luke’s Hospital research department in Milwaukee for my clinical trial for a medication going for approval. Linda Boehm was the most understanding person on all levels. She would be waiting at the front doors with a wheelchair…[Read more]

        • Glad to see Brittany is back on line. Hope you are feeling better. This Coronavirus has really changed the game for all of us. We were to be flying home today but have cancelled and are just staying put at our home in Florida. We had to reschedule our appointment at Mayo until May. It’s just to scary right now for me to be flying with all that’s…[Read more]

        • Bill Jones posted a new activity comment 4 months, 4 weeks ago

          Well he sure has been through alot for his age. And you also have been through quite a bit. my problem is I just turned 65 this week, have been dealing with the health issues for about 5 years now. My oxygen requirement has increased dramatically. The transplant idea was alway mentioned, but have been taking it at a slower pace, in hopes of…

          [Read more]

          • I’m familiar with waiting for a new medicine or treatment because we did that for as long as we could too. I would add to that, waiting for advancements in transplant and dramatic improvement in survival rate. What I suggest is, if your team will approve it, at least go through the extensive process that is needed in order to list you. Go…

            [Read more]

        • Bill Jones posted a new activity comment 4 months, 4 weeks ago

          Oh Thank you Colleen. Eventually I will get the hang of this. That great news for your son. May I ask what his age is?
            • No problem. I just want to make sure people see your questions.

              My son became symptomatic at age 6 but not diagnosed until he was 8. He was 14 when he received his transplant and is 20 years old now.

              FYI: it is more common for PH patients to only receive a double lung transplant because they have discovered that the heart has the ability…

              [Read more]

              • Well he sure has been through alot for his age. And you also have been through quite a bit. my problem is I just turned 65 this week, have been dealing with the health issues for about 5 years now. My oxygen requirement has increased dramatically. The transplant idea was alway mentioned, but have been taking it at a slower pace, in hopes of…

                [Read more]

                • I’m familiar with waiting for a new medicine or treatment because we did that for as long as we could too. I would add to that, waiting for advancements in transplant and dramatic improvement in survival rate. What I suggest is, if your team will approve it, at least go through the extensive process that is needed in order to list you. Go…

                  [Read more]

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