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    • #29927
      Colleen Steele
      Keymaster

      Here we go, the start of another month. What is May looking like for you? Do you have any appointments, procedures, new treatments, anything coming up that you want to tell us about? Let’s share so we can support each other.

    • #29935
      Carol Volckmann
      Participant

      Yes Colleen, here we go a new month, May. Well the good and not so good news. First the not so good.

      I have been for the last year struggling with fecal incontinence caused by Sclaraderma which also caused my PAH.

      The doctors felt I was a good candidate for the InterStim – an implanted stimulator which would control incontinence. So, I went ahead with the surgery along with physical therapy to strengthen my muscles. This all happend last August.

      Well it all helped, but … not enough. I am fine if I do absolutely nothing. As soon as I do anthing physical I have accidents all the time. In the last couple of months it getting worse.

      I have now come to the collusion I have no choice but to have a colostomy. That is the last thing I want, but if I am going to have any quality to my life I have to move forward. So many questions, so many emotions.

      I am going to wait till 1st of July as we are in the process of packing up and will be moving to our new tiny home here in Port Ludlow. I know I will be unable to do very much after surgery so I am going we wait.

      The good news in May – I have my 77th birthday and plan on having many, many more and hopefully get an electric bike and do more traveling.

      • #29941
        Colleen Steele
        Keymaster

        @cdvol3gmail-com ah no, I’m so sorry the InterStim hasn’t worked well for you. It’s really hard when you put a lot of hope into something and it doesn’t turn out. No one wants a colostomy but like you said, it will return some quality of life to you. Keep a look out…I’m going to start a topic about colostomy to provide support to you and anyone else who may eventually go through this.

        On a brighter note…yay to celebrating 77 years of wonderful you! What day in May is your birthday?

      • #29948
        Jen Cueva
        Keymaster

        Hi @cdvol3gmail-com, I wish you an extraordinary Happy Birthday today from Texas!

        I hate to hear that the stimulator did not do what we had hoped. I know that this has been an ongoing struggle for you for a while. You have worked hard to do therapy and your part. I am sorry that you are now moving to a colostomy.

        I am excited that you are doing the move-in. That house has been ongoing, and I am happy that it is finally moving time. Please do pace yourself and keep us posted on your surgery date later this summer.

        You have a lot on your plate, sweet lady. Let us know how we can best support you as you prepare for this procedure. I hope that you will have some freedom after that. Plus, riding that E-bike will be a great reward after your recovery from the procedure. Maybe we can motivate each other; my goal is to get back on my E-bike and do 2 rides before the end of the month!

        -Big hugs from Texas to you.

    • #29937
      Terry
      Participant

      May,May go away bring on June.
      For May I have appts. for flu shot ,petct scan of lungs, 2nd. Covid shot, Cardiologist Appt. , two blood tests and PAH doc. Then in between misses has flu, covid shots, hospital re broken wrist and nose. Might chuck in a visit to GP to say hi.

      • #29943
        Colleen Steele
        Keymaster

        @terry I don’t think you and the Misses have enough to do in May, better make some more appointments.

        I hope all goes well for the both of you. Update us as you check the appointments off. Congratulations on the upcoming 2nd Covid shot. Hoping for 0 side-effects for you.

      • #29949
        Jen Cueva
        Keymaster

        Hi @terry, wow, you and the misses have a busy schedule this month. I hope that all goes well for you both. Please keep us posted, and let us know how we can support you both.

        I always love reading your updates. I know that the misses must be one special lady. Take care of each other.

    • #29944
      Carol Volckmann
      Participant

      Thank you Colleen for your caring supportive words. Birthday number 77 is tomorrow! I have always looked forward to them all and will keep looking forward. Thank you 😊 ❤

    • #29945
      Colleen Steele
      Keymaster

      HAPPY BIRTHDAY @cdvol3gmail-com! I wish you the best always!

    • #29950
      Jen Cueva
      Keymaster

      May is starting on a busy note, thanks to a brief stay at Hotel de Methodist. I have had 2 appointments already. I also have a follow-up with my PH team later this month. I do not expect any tests after all that they did during my stay last week.

      I have home health, which is virtual, so that is weekly for now. I also have another appointment with my kidney doc later in the month.

      I am happy to be home and staying busy, just not so much with medical appointments, hehe.

      Does Cullen have any appointments this month, @colleensteele? What about you? Caregiver appointments count, too! We all need our caregivers in tip-top shape.

      • This reply was modified 5 months, 2 weeks ago by Jen Cueva. Reason: did not tag Colleen
    • #30058
      Terry
      Participant

      So how good is modern technology. Looked up my results from the petct scan I had last week . The nodules in my lungs are still there but not changed from the last scan 12 months ago. Thats good. No other nasties detected between my ankles and scalp other than my statuesque muscular torso and Clooneyish facial features looking a little tired.Must be too much sun. Hell,the way I’m feeling might cancel my cardiologist ,PH appointments next week and tell my misses I’m cured and good to go back to the marital bed.
      Bugger, need to stop dreaming and take my 7 nightly tablets but the ct result was good anyway.

    • #30069
      Jen Cueva
      Keymaster

      Hehe, @terry, thanks for the morning laughs. You never fail to make me laugh no matter what you are writing about.

      Yes, isn’t it crazy when we can read our test results in our online charts, etc.? I am grateful because I catch things at times the docs may have overlooked.

      Oh, the misses, she must already know all of your tricks, so good luck with that, LOL. Am I correct?

      Take care, and yep, maybe those 7 pills are helping the nodules, too.

    • #30260
      Jen Cueva
      Keymaster

      Hi @cdvol3gmail-com, I’ll be thinking of you and Dick as y’all meet with the ostomy nurse tomorrow. I realize this will only be the beginning since you won’t have surgery until July.

      Big hugs and prayers are coming your way. This is so important for you. I know that you’re ready to tackle this and have some freedom back. 💜

      • #30263
        Colleen Steele
        Keymaster

        @cdvol3gmail-com my thoughts and prayers will be with you as well. I know this isn’t the direction you wanted to go in but I think when all is said and done, you will discover it was the right one. We are here for you!

    • #30266
      Carol Volckmann
      Participant

      Thank you Jen and Colleen for your prayers, support and positive feedback. I needed that.

      I meet with the ostomy nurse tomorrow but will wait after we move onto our new home to have the surgery – July.

      In the meantime I have so much to learn. Thanks again you are both such treasures and I do appreciate your help along this journey. Hugs to you both.

    • #30270
      Jen Cueva
      Keymaster

      Thank you kindly, @cdvol3gmail-com, but I must say that you and our other members are treasures.

      I am certain with the move and all, July will be here before you know it. Please let us know how best to support you as you prepare on yet another journey with this colostomy.

      I realize that it will be tough to keep you down and resting as you recover. Tell Dick if he needs reinforcement, reach out to us, LOL.

      Thinking of you both as you have many new things going on at once.

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