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    • #31335
      Jen Cueva
      Keymaster

      It seems surreal that summer is coming to an end. As we look ahead this month, what is on your medical calendar for August?

      Do you have events planned that you are looking forward to that are not medical-related? We need a bit of balance.

      Most of my medical appointments are my usual routine labs and follow-ups. But, I am interested to see the post-COVID neurologist’s thoughts. I see her on the 20th.

      We also have a mini-vacation planned with our daughter and “son-in-love” at the end of the month. Her birthday is on the 25th. We had planned this months ago. But we keep an eye on this new variant in case we need to reschedule. So, stay tuned.

      What’s on your agenda this month?

    • #31353
      Carol Volckmann
      Participant

      Really glad Jen to hear you will be seeing your neurologist this month. Hopefully you will she will be able to give you some insights of the “whys” and “whats” to do to help you.

      Very happy you ate going to take a well deserved mini vacation. Are you headed somewhere special?

      My August is going to be recovery, patience, learning more how to care for my ostomy, appointment with my Rhumotologist to find out if all my abdominal issues are caused by Sclaraderma and/or PAH.

      Planning for September, we were going down to CA to visit with grandchildren,  but now with covid and delta that may have to be push ahead again.

      Hope everyone stays safe and well this month! Big hugs from WA.

       

       

       

       

    • #31363
      Jen Cueva
      Keymaster

      Thank you @cdvol3gmail-com, I appreciate your support. I do owe you a check-in, sorry my schedule has been hectic the last few weeks.

      Yes, we plan to meet the “kiddos” in San Diego for my daughter’s KK’s birthday. But keeping an eye on this delta variant in case we have to reschedule.

      Where in CA are your grandkids? I hope that this variant stalls shortly and does not get out of hand and start this crap all over again.

      I know the patient part of recovery is the least fun. It’s difficult when we want to do it all for ourselves. I am grateful that we are blessed with amazing husbands and caregivers as well as close friends. I keep you and Dick both in my thoughts and prayers.

      Would you please keep us posted and let us all know how we can best support you?

    • #31372
      Jen Cueva
      Keymaster

      Hey @clydedodge, how are things going with the gallbladder? Do you have any appointments coming up this month?


      @wheeldog
      , was your nurse coming this week or next? How are you holding up? Any appointments for you this month? How’s the fluid?


      @jimi
      , anything going on with you? I have not seen your post in some time.

      Did you have that cryo-therapy procedure on your nose? @carol-alexander, how are you doing this month? Any plans?


      @texas2018
      , I have not seen you post in too long. Please let us know that you are doing alright.

      Some many of you, I have missed seeing. I hope that y’all are put enjoying the rest of the summer. Please pop in and let us know how you are doing.

      We care and worry about our PHamily. Let us know how we can support y’all this month.

      • #31385
        Roger Bliss
        Participant

        Took 0ff in the camper for 3 days last week. Had a fun time.

        The nurse is supposed to show up on the 10th next week.

        Got a doctor appointment on the 31st. Going to ask about getting x-rays before my appointment to see how the fluid is doing. Hard to tell how much fluid is in there without them.

        Got a new pain in my right lung……is that part of PAH? Feels like something is in there hurts pretty bad when I cough. Naturally I am coughing more than normal……go figure. Came on all of  sudden last night……better today. Never had that before. Monday and Tuesday we were working in some pretty dusty conditions……maybe that??? The wife and I just got back from covid testing to make sure it’s not from that. Should get the results in a day or two.

        I hope your trip works out for you and you have a fun time.

         

        • #31409
          Roger Bliss
          Participant

          Update…….

          Covid test came back negative for both the wife and myself…..yea!!!

          Pain in lung went away…..not sure what that was all about??

          Coughing more than usual, so cut back 1 breath on Tyvaso to see if it works.

           

        • #31414
          Jen Cueva
          Keymaster

          Hey @wheeldog, I am so happy to hear that you and the wife tested negative for COVID. Also, the lung pain, hopefully, is resolved for now.

          Getting away in the camper for a few days must have been relaxing. Did you go near the water or where?

          I am sending positive thoughts and prayers your way on the 10th when your nurse visits. It may be helpful for you and your wife to create a list of questions that you have.

          As far as the lung pain. Was it a tightness when you took a breath? I do tend to have lung pain at times that radiates to my shoulders. I have chest pain and tightness more, though. Often PH patients describe this as an elephant sitting on your chest.

          The cough, I hope, will resolve or decrease with the change in your Tyvaso. Please keep us posted and let us know how e can best support you.

        • #31450
          Roger Bliss
          Participant

          We had a fun time on our trip. didn’t stay near the water. Got a late start and stayed in Healy about 10 miles north of Denali Park the first night. Went through Fairbanks, down to Delta, then went on the Denali Hwy (it’s 136 miles long, mostly dirt) stayed about half way across in an abandoned gravel pit then home.

          Nurse stopped by last night. Sounds like my lung problems came from inhaling too much dust. She said that kinda stuff happens when you over do it. It makes your lungs and heart work too hard, which is not good. Gonna stay on 4 breaths for a while…..coughing is letting up. My right lung isn’t working as hard as my left, so the fluid is coming back. Will call the doctor and make arrangements to get an x ray before my appointment on the 31st.

        • #31453
          Jen Cueva
          Keymaster

          Hey @wheeldog, I am happy that your camper trip was fun. Too funny, you stayed near a gravel pit. You just can’t leave the stuff alone, can ya? Hehe

          Did the nurse suggest wearing a mask while around the dust all day to see if that helps? That and taking breaks certainly may help. I am sorry that the fluid continues to build up. I hope that, if anything, it will decrease each time, and eventually, they don’t need to go in and remove the excess fluid.

          With your right lung not working as well, it as=dds to the train on your heart and left lung. Take it slow, my friend, if you know what that means, LOL.

          Thanks for updating us; please continue to update us and let us know how to support you.

        • #31463
          Roger Bliss
          Participant

          Didn’t even think about the gravel pit……guess that is my “safe place”. LOL

          She didn’t say anything about wearing a mask……but…….I should quit being so cheap and fix my AC so I don’t need to roll the windows down when it’s hot. Guess that can wait till next year….it’s cooling off and the leaves are starting to change. Had the heater on all day today.

          As long as they can keep my lung drained, I am happy. If they can’t figure out why it’s it’s happening up up here, I am sure they can figure it out at UCSD. My Oncologist there said he can set me up with doctors there. I am impressed with that place….everyone knows what they are doing.

          I am not good at taking it slow. We are going on a “wine walk” at a friends ranch Sat. Gonna take the camper as the wife and I won’t drive if we have more than 1 drink. I could probably keep up if it was a “pub crawl”…..maybe they will loan me a horse for this one????LOL

          I am one of those people who won’t let PAH, cancer or anything else make me “take it easy”.  I go till I can’t physically go any more, then rest till I can get going again. Remember….as long as you keep moving….they can’t put you in a box.

           

           

        • #31466
          Jen Cueva
          Keymaster

          OMG, @wheeldog, I almost spit out my iced tea reading your comments on the wine walk versus a pub crawl, LOL

          You never cease to amaze me. I can certainly see that you are not a man who “takes it slow” I am hoping that pacing yourself a little will help if you run into any troubles.

          I would love to join you, and the wide as the weather there sounds much cooler than here in Texas; hehe.

          I like you, have always thought of the team at UCSD as top-notch, so no resentment from me on that. I hope they can keep this fluid buildup off the lungs to at least a much slower lower level.

          I hope that you and the wife enjoy the wine walk and the camper weekend on the ranch. Take in some of that fresh, cooler air for me. Until next week, enjoy, my friend.

    • #31410
      Carol Volckmann
      Participant

      Hey Jen, our daughter and family live near Sacramento. Three grandchildren 21, and the twins 16.

      My recovery has given me a set back. The ostomy seems to be okay and dealing with it is going okay.

      My tummy is very boated and quite painful. No one – the surgeon nor my new PCP don’t have a clue. I scheduled an appointment with my Rhumotologist for the 19th. I think it has to do with my Sclaraderma and PH. I know I have some issues with my liver and enlarged Spleen caused by Sclaraderma so … we shall see

      I hope you can make it to San Diego for KK’s birthday and have a really special time. I have a nephew who lives in San Diego- loves it.

      How is Manny doing? Been thinking about you both and your up coming appointment on the 20th.

      Sending lots of WA love and hugs ❤

       

       

      • #31415
        Jen Cueva
        Keymaster

        Aww, @cdvol3gmail-com, the trip to Sacramento to visit the grandchildren will be nice. I hope and pray that your ostomy recovery and adjustment are improved this week.

        I hate that you are already struggling with bloating and pain. Abdominal bloating is so uncomfortable, I am certain. Did they not think this is due to an increase of air that is not getting out?

        I hate that this seems to be another obstacle. Praying that your rheumatologist can help with some answers and relief soon.

        Manny is much better, thanks. His lungs are still a bit tight after that respiratory infection. But he is working and taking breaks.

        Thanks for your kindness and support as you struggle with your recovery. I am sending lots of positive vibes, hugs, and prayers your way.

    • #31422
      Jen Cueva
      Keymaster

      Thinking of you today as the nurse comes, @wheeldog. My apologies I was a day off when I responded yesterday, LOL

      That is old age; I guess creeping in.

      Did you and your wife make a list of questions that you have for her?

      I am sending you positive thoughts and prayers for answers and reassurance. Please pop on and let us know how this goes when you have time.

    • #31460
      Carol Volckmann
      Participant

      Hey Jen, just reading in the NYT how the hospitals in Texas especially Southern Texas are totally overwhelmed again with covid and delta cases.

      I hope you and Manny are still doing okay and Manny is getting stronger every day.

      I forgot the dates you were going to San Diego to celebrate KK’s birthday. I hope that happens and your time is very special.

      I am still on the hunt to find out why all of a sudden I am so bloated and edema is really quite bad and now so is my breathing.

      We have ruled out anything to do with my surgery. That situation is very good. Now more tests and appointments to find answers and we will!

      Wheeling. I hope you are doing better and finding answers. I admire how much you find something positive with every turn! Keep it up and stay safe.

      Sending out positive energy and love!

      • #31467
        Jen Cueva
        Keymaster

        Hi @cdvol3gmail-com, we are doing alright, thanks. KK’s birthday is the 25th, so we have a little time still.

        But, thankfully, the local smaller hospitals are nothing like before with the COVID outbreaks. Although Methodist downtown has had several variants inpatient at once, they are both at bad, but the Texas Children’s hospitals are in worse shape, unfortunately.

        My last few weeks have kind of ran into one long week, so my apologies for not getting back to you.

        I hate that you are having so much pain and bloating. It sounds like it could be more scleroderma than PH or maybe a combination of the two after your surgery. I was hoping this had improved for you over this week.

        WE will catch up shortly; maybe this weekend will be better, now that Manny is back at work for the most part. I appreciate your positive support and hate that I have not been as supportive this last week or so.

        Please know that you are in my continued thoughts and prayers.

    • #31461
      Carol Volckmann
      Participant

      Sorry wheeldog, my last post did an auto spell check and put wheeling!  It really annoys me when it does that! Take good care!

    • #31482
      Jen Cueva
      Keymaster

      How are the appointments going so far this month? I have a post-COVID clinic appointment on Friday, so that is my next appointment.

      What are things happening for you this month? If you have had any appointments, tests, and procedures, please let us know to best support you.

      • #31497
        Colleen Steele
        Keymaster

        @JenC, I will be anxious to hear how that appointment goes for you. When do you receive your 2nd vaccination?

        Well, I have been having some concerning issues. I’m not sure if it is blood pressure or cardiac related or both. First thing this morning Cullen HOUNDED me until I called my cardiologist and made an appointment. I have one scheduled for August 30th.

        • #31517
          Jen Cueva
          Keymaster

          Hi @colleensteele, I hope that if these concerning issues increase that you will go to urgent care. I know that you have so much on your plate. But I also know that you must take time to care for yourself.

          WTG, Cullen? I love him! The tables have certainly turned, but he learned from one of the best, you.

          Please know that I am sending you positive thoughts, prayers, and love. Please keep us posted on your appointment on Monday, the 30th.

          I am hopeful for this post-COVID neurology appointment on Friday. It seems like I have been waiting for months.

        • #31526
          Colleen Steele
          Keymaster

          @Jenc no worries. If there is any hint of me getting worse Mr. Cullen will make sure I go to urgent care. He is giving me a dose of my own medicine, so to speak.

        • #31548
          Jen Cueva
          Keymaster

          I am so grateful for Mr. Cullen. But I pray that nothing gets worse. Please LMK if I can be of help. Again, take it easy in between whatever you are doing. You are loved and appreciated.

        • #31579
          Jen Cueva
          Keymaster

          Just a brief update on my post-COVID neurology appointment on Friday. I think that it went pretty well. I appreciate your love and support as I was waiting to see her for several months.

          She was thorough and compassionate. She reminded me that these symptoms are real, which we all know is important to feel validated. These are all qualities that we seek in our healthcare providers, right?

          She added a medication to try and help my focus and concentration as well melatonin, and a steroid dose pack, when I return.

          Unfortunately, she reports that most people who have these neurological symptoms post-COVID start to improve about 1 year after being diagnosed. For me, this is November, so I think I am moving along much better than some. I am grateful.

          She ordered more labs to check for autoimmune stuff, vitamin levels, etc. She wants to rule out any of those little things.

          I need another MRI of my brain as she wants to compare it to the previous one. I will schedule that once we return from San Diego.

          Again, I appreciate the love and support that each of you gives to our members. Y’all are such a compassionate group.

        • #31591
          Colleen Steele
          Keymaster

          @jen-c it sounds like this appointment was worth the wait! What a great doctor! She is really dotting her I’s and crossing her T’s! I’m anxious to see if Melatonin makes a difference for you at all. I have no doubt the steroid will help but I hope the side-effects go easy on you. Let us know when the MRI is scheduled. I want to say extra prayers for you during that time.

    • #31557
      Darla McCollim
      Participant

      We are trying to find reason for my syncope. If its the PAH that moves me from stage 1 to stage 3.  Going for ENT consult to see if Carboplatin damaged my inner ear to rule that out. I don’t think so but need it confirmed. Trying to ultimately get Pulmonary to sign off on abdominal debulking surgery for cancer. That decision either way has a huge impact on me.

      • #31571
        Colleen Steele
        Keymaster

        @darlarayne how long has it been since you had a heart cath and/or 6 minute walk? They can help determine how much the PAH is causing the syncope. I’m so sorry that you are going through a lot right now. I pray you get answers soon because the not knowing is the hardest. Please update us whenever you feel up to it.

      • #31578
        Jen Cueva
        Keymaster

        Hi @darlarayne, as @colleensteele ask, I would be curious about your recent RHC. Also, have they tried a tilt test to see if your blood pressure or heart causing these syncope episodes?

        Have you hurt yourself when passing out? Experiencing this in the past, I know that this can be scary. It also is frustrating when you have no answers to what is causing it. It sounds like your doctors are trying to rule the other issues out before deciding on the next step.

        It sounds like you are trying to manage many health issues and some difficult decisions. I pray that they find answers, and you will feel better soon.

        Please update us when you can. How can we best support you as you make such tough decisions?

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