Pulmonary Hypertension News Forums Forums Our Community Weekly Wins New Month And New Week: Let’s Hear About You Recent Wins!

  • New Month And New Week: Let’s Hear About You Recent Wins!

    Posted by Colleen on August 3, 2020 at 2:27 pm

    It’s hard to believe it’s August already! How have you all been doing? What were your weekly wins last week? What stands out as your biggest win in the month of July?

    I had a big health insurance win in July and last week Cullen completed a few more 1st appointments with his adult team. One more to go and he will be officially transitioned.

    I want to hear about you! Share your weekly wins!

    jen-cueva replied 3 years, 5 months ago 6 Members · 43 Replies
  • 43 Replies
  • jen-cueva

    Member
    August 3, 2020 at 4:52 pm

    @colleensteele, I love this! Just last night, I remembered that I have been slacking on weekly wins.

    You had a massive win with the insurance, and you did not let down! You did an amazing job, and I know that your son is proud of you, too. I am! Insurance struggles zap you emotionally and physically. I am so happy that this ended up a huge win!!! Then, those first appointments that you have been planning for the last few months. I know that you both will be happy to have the last one done for now.

    For my insurance, well, I am remaining hopeful. My PCP sent in his letter on Friday and why he wants me to see this neurologist. The neurologist will send in progress notes and results from my test last week once he interprets them. Just having the test done is step one, for that I am proud. Then, I made a brief trip to the beach; these both are wins in my book!

  • jen-cueva

    Member
    August 7, 2020 at 4:17 pm

    Happy Friday, y’all! This week, my win is that I made it to the lab the first time since my hospitalization. Of course, my hubby was “driving Mrs. Daisy,” as he says, but I made it.

    I usually go every 2 weeks, but because I am not driving, I put it off. My PH nurse called earlier this week and said I needed them done and this week. I made the excuse that I could not drive. She knows my hubby is off on Friday, most weeks, and suggested to go then. I need to stop telling them so much, hehe.

    What about y’all? What wins are you celebrating this week? Have a relaxing weekend and stay safe.

  • dawnt

    Member
    August 7, 2020 at 6:10 pm

    I had a pft yesterday, since my ph dr now wants one done each year. Preliminary results show that my lung function is a little better than it was in 2018 – when I was first diagnosed with ph and started medication. Hopefully the final results are the same, but I’m counting it as a huge win without waiting for the final results!

  • jen-cueva

    Member
    August 22, 2020 at 10:56 am

    Hi @dawnt, my apologies as I am not sure how I missed this win! This is great news to celebrate, even if we are a bit late to the party. Any improvements are always a huge win in my eyes! Did you hear back about the final results yet?

    This week, I finally had a virtual follow-up with the Neuro, although not as much information as I expected. But, the CD of my MRI he needs came in already, and my hubby dropped it off. These are both my weekly wins! I also was out of the house for almost 6 hours yesterday to get labs and run errands with my hubby. I am exhausted, but that is the most I have been away from home in a while. And, yes, I was mainly along for the drive, hehe.

  • dawnt

    Member
    August 23, 2020 at 9:59 am

    @jenc, no apologies needed! You’ve had more than enough to be thinking about with your own recent concerns. I have not received the final results yet, but confirmed with the person who handles my sleep apnea that the results showed improvement. It usually doesn’t take this long for the final results, but hopefully I’ll have them in time for my video visit with my ph dr 09/15. I figure any results that are ‘things are about the same’, or any range of ‘doing better’ are great wins and I’ll take them.

    So glad you’re closer to getting some answers. Waiting to hear the good news! I’m guessing that even though you were exhausted after your labs & errands it felt good to get out of the house for a bit. Take good care.

  • jen-cueva

    Member
    August 24, 2020 at 1:30 pm

    Hi @dawnt, I agree! Any stable results and improvements is always a big win in my book. I hope that your visit on 9/15 will also mirror this. Keep us posted.

    Thanks for your support as always. I hope that you are coping well this week. Take care of yourself.

  • jen-cueva

    Member
    August 28, 2020 at 11:53 am

    Happy Friday, y’all! What are some of your weekly wins? As I said before, this can be any little thing. Did you go to the doctor and get positive or stable news? Did you take a short walk? Did you get out of your PJs?

    Besides the massive win that God spared us in Hurricane Laura, I have another win. I did get in my pool yesterday evening and float a little and do some pool exercises. This is the first time that I have been in the pool for some time. It was so relaxing, and I could do some stretches and light exercises.

    Let’s hear it, what wins can you share this week?

  • Colleen

    Member
    August 28, 2020 at 2:06 pm

    @jenc I was relieved to hear that you weren’t greatly affected by Hurricane Laura. Ah, being in the pool must have felt so good! Water exercises are the best!

    Cullen stayed out of the hospital so far this week and his BP is so good he’s getting headaches from not being use to it. Still though, it’s a win.

  • jen-cueva

    Member
    August 31, 2020 at 9:49 am

    Thanks, @colleensteele, we were so grateful that it missed us. I am also thankful that Cullen stayed out of the hospital. I hope that his body is adjusting better this week to all of the med changes. I hope that in time the headaches will decrease for him.

    I hope that y’all rested the weekend.

  • melissa-egtsgmail-com

    Member
    September 2, 2020 at 5:18 am

    I’ve been working really hard launching a business and I had been neglecting my treadmill. I’ve done it twice this week and I will try not to slip again!

    • jen-cueva

      Member
      September 2, 2020 at 2:08 pm

      Excellent job, @melissa-egtsgmail-com! I am like @colleensteele and curious to know more about your business. What type of business? Also, excellent job on the treadmill! Both of these are impressive wins for the week/month! Congrats!

  • Colleen

    Member
    September 2, 2020 at 12:52 pm

    Both your business and treadmill efforts are big wins, @melissa-egtsgmail-com. What is the business you are launching?

  • melissa-egtsgmail-com

    Member
    September 2, 2020 at 2:13 pm

    Aren’t you tired of your nasal cannula always falling on the floor? I’m patent pending on a cover that fits over nasal cannula prongs when the nasal cannula taken off the face. It’s clean, convenient storage because I have to be very careful about infections. I have some hospitals interested in it.

  • jen-cueva

    Member
    September 2, 2020 at 2:32 pm

    Wow, @melissa-egtsgmail-com, that is an excellent idea and invention! How exciting and not just for you bit so many others, like myself, who have this issue, too. Can you share the website when you are ready in case you are selling to others also? I want to look at it either way.

  • melissa-egtsgmail-com

    Member
    September 2, 2020 at 4:26 pm

    THank you! Am I breaking any community rules if I say more? I do have a website up and an Instragram account. I’m not selling any yet. I expect to hit the market in the first quarter of next 2021.

  • melissa-egtsgmail-com

    Member
    September 3, 2020 at 9:04 am

    Anyone who is interested in knowing more about the nasal cannula prong cover can follow me on Instagram @o2living. That’s not a commercial plug. It’s my personal Instagram where I talk about working and living with supplemental oxygen and my entrepreneurial and personal journey.

  • jen-cueva

    Member
    September 3, 2020 at 11:17 am

    That works, @melissa-egtsgmail-com! Thanks so much. This must be an exciting new adventure for you. We do allow the sharing of items that others find is helpful. But, the IG account is perfect, especially since you are not yet selling these. Super excited for you!

    How long has this been in the making?

  • melissa-egtsgmail-com

    Member
    September 3, 2020 at 2:45 pm

    It’s been almost a year now. I got tired of my nasal cannula always falling on the floor and hanging it over doorknobs and chairs that other people have touched seems like not a great idea, either. I couldn’t find one to buy so I made my own and kept on going!If anyone is really interested I do have a website up at jmhartfielhealthcare.com. Stay healthy!

  • jen-cueva

    Member
    September 3, 2020 at 2:48 pm

    Thanks, @melissa-egtsgmail-com, for sharing. This is a long time coming. But as far as patents, not as long as I was thinking. I also did follow you and message you in IG. I am certain that this will help many with this common issue.

  • Colleen

    Member
    September 3, 2020 at 3:54 pm

    @melissa-egtsgmail-com congratulations on your great idea and for pursuing it. I’m impressed by people like yourself who think, “Hey, I should make this and patent it,” then actually do it! This will help so many and that must make you feel good!

  • carol-volckmann

    Member
    September 3, 2020 at 6:25 pm

    WOW all these wins – all these positive vibes put out there when so much all of us go through can be overwhelming and energy draining Jen, Colleen, Melissa and Dawn share shout out WINS! It made my day, thank you. I am still having issue with fecal incontinence even with the implant of the stimulator, but, it is better and I remain hopeful. Another win this week – I had a check up with WA Pulmonologist including CT scans, echo, blood work up and my 6 min walk. Walk wasn’t the best but all my test came back a bit better than last Feb when I saw my Pulmonologist at UCLA. So good wins this week. Thank you everyone for allowing me to focus on the positive! 🙂

  • dawnt

    Member
    September 3, 2020 at 6:55 pm

    Great news Carol! So glad to hear your tests came back better than your previous ones. My last 6 minute walk wasn’t as good as I wanted, but overall I’ve been getting good reports. Funny timing, I just had an echo yesterday, but haven’t gotten the results yet. So good to hear your news!

  • carol-volckmann

    Member
    September 3, 2020 at 7:42 pm

    Thank you Dawn. Hope your echo is better than last time. I don’t know about you, but I believe my 6 min walk was not as good is due to not exercising as I did before covid-19. Sending you good vibes for a good echo!

  • jen-cueva

    Member
    September 4, 2020 at 11:26 am

    Hi @cdvol3gmail-com, thanks for your support always. I am happy to hear your wins this week. I am grateful that your tests showed some improvement since your last. Any stability or bit of improvement is a win in my book!

    With time and a few more adjustments, I am hopeful that you will see more improvements in fecal incontinence from the stimulator.

    As you mention, the change in 6MW probably was effected by missing the exercise pre-CoVid. Fantastic job and hugs from Texas. <3

  • jen-cueva

    Member
    September 4, 2020 at 11:28 am

    Hi @dawnt, I hope that your echo shows stability or improvements from last. Please let us know when you hear back- hugs from Texas.

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