• Hi Jen,

    I just called today to obtain authorization to return the oxygen generator and the canisters! I still have problems on any incline but that is normal with my PAH – so. I will keep walking and doing my breathing excersises and give back the oxygen for someone else can use.

    I am so happy your doctor is thinking about the implantable pump…[Read more]

  • Hey Brittney, bad backs run in my family and I had chronic pain for years. The only thing that did help me was acupuncture until one day I was unable to urinate. I ended up having a lamenectomy (sp) on L4-5. Swimming was the best therapy or just walking against the water while the water stayed chest high. Stretching helps, heat helps and having…[Read more]

  • Hi Shannon, I recently got out of the hospital because they thought I might have the covid19 – but I did not fortunately. There is one terrible cold going around the country – slight fever, awful caughing and lasting 2-3 weeks. The big symptom aside from a fever and caughing is shortness of breath. Of course having PAH or PH that can be a…[Read more]

  • Hi Brittney, I am so happy you have your King Charles, I forgot his name but I know he brings you so much fun, comfort and LOVE! Our Spirit is 9 – his name pretty much describes who he is. Our last Golden was 10 when we lost him to cancer – River was full of love and fun. We think River must have picked out Spirit (okay folks you’re older now and…[Read more]

  • Randy, thank you for name and number for your doc in Phoenix! You are terrific!

    JEN, thank you, i am feeling so much better. Just finished cleaning the coach of Golden Retriever hair. Hopefully I will be ready to turn in my oxygen this coming week!!!

    What a wonderful support team! Hugs all around!

  • This is for ripple76. I saw that your supplier for oxygen is no longer supplying it for you. I just got out of the hospital and had to be on oxygen. A national supplier I received oxygen is called Lincare 800-346-6719. They came out to our motorhome where we live and delivered an oxygen generator and canisters that I can use going outside. They…[Read more]

  • Hi Randy, thank you your doctor’s name,I wrote his name down. The folks here in Cottonwood really did not know very much about PAH and nothing about remodulin, but they were on top of pneumonia!

    I was on subQ for 8 years until it got so painful pain meds did not help so now I am on the Hickman line. The mixing and all the supplies at first was…[Read more]

  • Thank you Jen for all your encouragement. Yes, we have everything wr need in the coach. The special pharamacy ups to wherever we are and we are able to do all our remodulin mixing 7 at a time so that takes the pressure off. I do hope I will be able to go off the oxygen in another week.

    Currently we are in Cottonwood AZ and plan to stay here near…[Read more]

  • Hi Colleen, thank you so much for your concern. I tested negative for the corvid-19 and was discharged from the hospital with oral antibiotics and oxygen- we have an oxygen generator in the motorhome along with 12 canisters. The pneumonia is much better and I am hopeful that in another week I will be back to my activities!

    Our hope is to travel…[Read more]

  • Carol Volckmann posted a new activity comment 2 weeks, 1 day ago

    Hi Colleen, the new date for the implantable pump for remodulin is for 2021. I have written the the doctor at the FDA who heads up the medical devices including the medtronic implantable. He did email back and said he would get back to me. The way things are right now who knows!!! When ever I hear any news, I will let you know! Hugs to you!
    • Thank you Jen. Yes I am still in the hospital, but getting better. You are always right there with your earm and happy “air hugs” love them and sending some back to you in Texas!

    • I am so sorry to hear – it is good that he does not have a fever. You are in my thoughts every day and send lots of positive energy and love! Hold on!

    • Thank you Brittney. Your words of encouragement mean a great deal and you are right any progress in the right direction is GOOD! How much our loved ones do and are there for us can never be taken granted and sharing our appreciation is so important – they are our life lines as I know your mom, boyfriend and puppy are for you and all those in the…[Read more]

    • Thank you Colleen. I have been thinking about you and your family and reading all your updates. It has to be so difficult for you in Belleview. It panic everywhere and my heart goes out to you and all on the Forum whoes lives are so impacted by this virus.

      I will keep you updated I do feel a bit better than I did on Monday. Please take care of youself.

    • I don’t mind the silence so much as having my husband helping me being more comfortable, fixing things like the bed,fixing the hospital gown, helping me in the bathroom, asking more questions than I can think of – that’s what we do for each other and it is so much more difficult not having that support.

      I hope you are feeling better Brittney -…[Read more]

    • Hey Brittney, I am so sorry to hear you are back in hispital with bronchitis! Not fair, not fair at all! Are they still going to go ahead with the new port? You have been through so much. You are in my thoughts every day!

      I was just admitted from the emergency room to isolation I guess I have phenomena and have been tested but no word yet. We are…[Read more]

    • Hi Brittney. I cannot really add much more than Colleen, Shannon and Sarah have shared with you. I just want to wish you the very best through this. It really sounds very hopeful that this will be right for you. I know you are strong and will not hesitate to speak up if you need more/less or different pain meds to make you more comfortable.…[Read more]

    • No apologies necessary – no I did not ask about wet suits. I use to wear one when (before PAH) for diving. Too uncomfortable. With subQ I could swim covering site with Aqua Cel Foam, but with IV I no longer swim – waiting for the implantable pump!!!

    • Before I had a central IV line, swimming gave me the best exercise and relaxation. A number of years ago I did sign up for therapeutic water excercise after back surgery – it was very therapeutic and since I love the water it was great. I gave me more excercise than any other – it works gently on the whole body. Warm salt water was even better,…[Read more]

    • Really good topic Colleen, I guess all of us has had to cope with disappointments, sometimes devastating ones. I cannot imagine what it would be like if I were in line for a transplant and was turned down.
      The biggest disappointment I that keeps cropping up is being told I am an excellent candidate for the implantable pump for Remodulin – that…[Read more]

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