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    • #25968
      Jen Cueva
      Moderator

      Hi y’all, I wanted to welcome our newest forum members to the group. This is something that we are doing weekly to offer a place for the new members to share a bit about their PH journey. I have also noticed that some of our other members have shared some of their journeys with them, too. I love that!

      This week, we welcome @kroywr, @shellc88, @sue-bouse-team, and @jbolendz. If you haven’t already I, invite you to share a little about yourself. Here are some suggestions:

      Your name and location
      Patient or caregiver
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      We are so happy you found us. Please reach out to either me,@colleensteele, or @brittany-foster with any questions that you may have about the forums. Welcome!

    • #25987
      Dawn
      Participant

      Welcome! @kroywr, @shellc88, @sue-bouse-team, @jbolendz. I’m Dawn, and I live in central Pennsylvania. I was diagnosed with ph a little over 2 years ago. I’m on adcirca & ambrisentan, and those are the only meds I’ve been on so far. Instead of me having any questions for you, I would say that I look forward to hearing your stories of your ph journey however you want to share them. I think you’ll find this to be a very informative, caring place.

    • #26004
      Rayetta
      Participant

      Welcome! My name is Rayetta and I was diagnosed with PAH in February of 2018. I live in South Dakota. I am currently using Opsumit and Adcirca as my two main drugs to treat my PAH. My PAH was associated with a connective tissue disorder. I still haven’t gotten the official diagnosis as to what CTD I have. There are so many that it takes a while to figure out which one you have sometimes. I use oxygen when I am up moving around and at night with a CPAP machine. I also take diuretics and blood thinners. I have congestive heart failure also caused from my PAH. I feel okay for the most part, but notice that I tend to wear out easily. My condition is stable and my pressures have gone down from 120 to 41, which is good. Again, Welcome to the group.

    • #26048
      Jen Cueva
      Moderator

      Thank you, @rayetta-meverden-johnson, for sharing some of your story. I am grateful to hear that your pressures having improved dramatically! Is your heart failure improved as well with this decrease in your pressures?

      I know that finding the exact CTD may be frustrating. They test so many ways, and it takes time. I am hopeful from your story that your doctors are doing what is best for you. Do you feel like they are meeting your expectations? I know this pandemic has slowed many things down, has that impacted some of this for you In SD?

      Welcome again, and we are happy to have you. I am pleased to see that you are posting and sharing already. I have had PH for 15 years, and this group continues to teach me all of the time.

    • #26128
      Colleen Steele
      Keymaster

      This week, we welcome @patrickb, @lindaljacobs, @phyu-sin and @jennifers101875. If you haven’t already I, invite you to share a little about yourself. Here are some suggestions:

      Your name and location
      Patient or caregiver
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      We are so happy you found us. Please reach out to either me,@jenc, or @brittany-foster with any questions that you may have about the forums. Welcome!

    • #26223
      Jen Cueva
      Moderator

      This week, we want to welcome, @ivana, @sandydenn, @irene, @renee, @asumyreads, @erich, and @teddy. We are happy that you have found us. If you have not yet, please share a little about yourself and your PH journey. You can share as little or as much as you like. Below are just a few suggestions.

      Your name and location
      Patient or caregiver?
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      Please reach out to either me, @colleensteele, or @brittany-foster, with any questions that you may have about the forums. Welcome!

    • #26235
      AndreaS
      Participant

      Thank you for the welcome. I’ve already found this site to be so helpful. My name is Andrea and I’m in the Kansas City area. I was just diagnosed in April and my PAH is associated with my autoimmune condition, Mixed Connective Tissue Disease. I’m still learning a lot and coming to terms with the diagnosis. I have my first in-person appointment next week. Does anyone have suggestions for questions for the doctor on that first visit after diagnosis? On the same day, I will also have a lung function test, CT scan, and walking test. I am taking Opsumit and Tadalafil as well as Furosemide and Spironolactone in addition to the treatments for my MCTD. I’ve have seen improvement in my PH symptoms since beginning the medications in early May. I also have questions about what to expect in terms of progression of the disease. Thanks for any guidance from those of you who have been through this phase.

    • #26238
      Irene A.
      Participant

      Hello Jen,
      Thank you for all the info.on sleep apnea.
      Its getting harder with shortness of breath and pressure in my chest.
      I,won’t see a Dr.with this Virus in Florida…my,lung Dr you have to use an elevator and I,take medical transport and someone is always sick.
      I don’t know what is going on,with my right ear as its been plugged for months as I,don’t know if it’s part of PH and Heart Regurgitation it pains a little on an off or I should say more like an ache.I bought everything from Amazon from ear wax remover to pain med for your ear it won’t go away .
      Oh I told my PA primary about shortness of breath she sent out an inhaler with albuterol….but I read on Google it causes your heart to race and you get jittery I asked her and she said it does do that I don’t know if it will do more harm or help with my breathing?
      My Grandson uses it as he has asthma and he is 7.
      I feel like I’m in a quagmire.
      It seems like when my blood pressure goes up I get nauseated and my ear and shortness of breath gets worse.
      If anyone can help me in any way I would greatly appreciate it very much.
      Good Luck And Stay Safe Everyone!🙏🌻

    • #26249
      Jen Cueva
      Moderator

      Hi @asumyreads, thanks for sharing some of your PH story so far. You are pretty new to PH. Was your MCTD diagnosed sometime before your PH?

      I am happy to hear that you see some improvements with your current treatments. Next week will be overwhelming; I am sure for you. Being your first appointment, I would certainly suggest making a list of your questions and concerns to ask while there. I tend to leave my notes at home, so I recently started making the notes on my phone, so I do not lose it. Once the testing is done and the doctors can look over it, they may offer more information then.

      I suggest making one person, maybe the PH nurse or MA, your one contact at that office. It helps when trying to get answers if you talk to the same person. As far as progression, it depends on each person. This is why we are all on different meds and a combination of meds that are specific for our bodies. Your doctor and nurse will best answer that.

      Having PH for 15 years, I find that “stable” is a positive for me. This means that I did not have much progression at that time. I am sharing a helpful resource from PHA that offers tips on preparing for your first appointment. Take someone with you, if possible. I know with COVID, this may not be an option. Good luck, and please do keep us posted.

    • #26250
      Jen Cueva
      Moderator

      Hi @irene, thanks for sharing some of your PH story. I am sorry to hear that you are having more shortness of breath and chest pains. Can you make a virtual appointment so they can see you and maybe offer some suggestions? These symptoms are most likely related to PH. But, anytime we notice an increase in symptoms, it is a good idea to let the PH team know, too.

      It sounds like your PCP was trying to help. Albuterol can cause jitteriness and a fast heart rate. I use the albuterol in my nebulizer treatments. If it is causing you more symptoms than helping, I would let them know. The PH team would be the best one to talk with. That being said, some PH patients use it as the benefits outweigh the side effects.

      If your symptoms continue to worsen, certainly do not hesitate to call and get the care that you need. I know COVID is scary, but your health is a top priority. Take care.

    • #26306
      Jen Cueva
      Moderator

      Another new week and we want to shout out a welcome to our newest members. This week, we welcome, @drose79, @mendo-bruce, and @dianacaudillmsn-com.If you haven’t already, we invite you to share a little about yourself. Here are some suggestions:

      Your name and location
      Patient or caregiver?
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      We are happy that you have found us and excited to learn more about your PH journeys. If at any time, you have questions, please do not hesitate to reach out to me, @colleensteele, or @brittany-foster.

    • #26402
      Jen Cueva
      Moderator

      Hey y’all, we had several new members this past week. We would like to welcome @gramajeanie67, @bartroestgmail-com, @neringa-siauliene, @cbdboxes, @melissa-egtsgmail-com, @mikebennett, and @shine725. What a great way to start the new week off, we are so excited to have each of you.

      If you haven’t already, we invite you to share a little about yourself. Here are some suggestions:

      Your name and location
      Patient or caregiver?
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      We are happy that you have found us and excited to learn more about your PH journeys. If at any time you have questions, please do not hesitate to reach out to me,@colleensteele, or @brittany-foster.

    • #26535
      Colleen Steele
      Keymaster

      Our PHamily keeps growing! Welcome to our newest members @talk2talk, @joaninlv, @ameliaogden, @fainter, @bill0415msn-com, @alexander, @joef, @kvasquez156gmail-com and @ja47646

      If you haven’t already, we invite you to share a little about yourself. Here are some suggestions:

      Your name and location
      Patient or caregiver?
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      We are happy that you have found us and excited to learn more about your PH journeys. If at any time you have questions, please do not hesitate to reach out to me, @jenc, or @brittany-foster.

    • #26543
      Jen Cueva
      Moderator

      Welcome, all to the PHamily! We are happy that you have all found us and hope that you can share a bit about your PH journey as well as any questions that you may have.

      Thanks, @colleensteele, I get excited every time I see a new member pop up. To all of our new members, this is a place for you. No judgment, and we are happy to help if we can. We have some amazing members who have been through and continue to go through the things that y’all may be going through.

    • #26656
      Jen Cueva
      Moderator

      We had several new forum members this last week. We are excited to watch this community grow. We are happy that each of you has found us and hope that you will find some support here. This week, we want to welcome, @lesliedills, @tammykusick, @jane42, @jeanettemorris, @nerissa, and @laura.

      If you haven’t already, we invite you to share a little about yourself. Here are a few suggestions:

      Your name and location
      Patient or caregiver?
      How long ago were you diagnosed with PH?
      What PH medications are you currently on?
      Do you have any questions for our members?

      We are excited to learn more about your PH journeys. If at any time you have questions, please do not hesitate to reach out to me, @colleensteele, or @brittany-foster.

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