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Help Me Welcome Our Newest Members
We here at the PH News forums love to watch our PHamily grow. I am excited to say that we continue to grow each week. For me, this means that others are receiving support from our awesome PHamily here.
We have had many new members, and I won’t tag them all. So, if I did not tag you, please do share a little about yourself if you are a newer member.
Thank you, @indihomaaol-com, for sharing some of your story in an older welcome message. We are happy to have you join us.
You are not required to share, but we enjoy getting to know one another better. Often as a newer member, some prefer to read and later decide to comment. That is perfectly fine, whatever you feel comfortable doing. We hope to offer a safe and comfortable environment.
Please help me welcome @grace, @ljfulenwider, @jmdesq, @mgnorwood, @johnrosenightingalegmail-com, @audreyt51970, @nickki55, @janet123, @jessicap, and @gelfwing83.
If you have not yet, please introduce yourself a little. Here are a few suggestions to help get you started.
Your name and location?
Are you a 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 look forward to learning more about your PH journeys. If y’all have any questions about the PH forums, please reach out to me or @colleensteele.
Again, we are happy to have you join us.
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15 Replies
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Welcome, everybody! I’m glad you found our helpful forums!
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Once again, we are excited to have many new forum members join us. Watching our supportive PHamily grow makes my heart happy. This is why we are here, to support one another and offer hope to those new to the PH community.
Just a little about me, well maybe a bit more, hehe
When I started as a forum member, I immediately fell in love with the special close-knit community. Then starting as a columnist for PH News was next. I was honored to be a part of such an awesome team and offer hope to others by sharing my experiences in my columns.
Not long after @colleensteele joined us as a moderator, I was later invited to help her moderate, and I gladly accepted. I was already a part of this amazing supportive PHamily. I could not ask for better co-moderators; Colleen and Britt are both awesome young women.
As a long-term PH patient and advocate, I am always happy to join in the conversation and help others as I can. I am extremely proud of you and enjoy getting to know y’all a bit more, But I quickly learned that y’all teach me many things and offer an abundance of love support for myself and our members.
This week, I hope that you all will help me welcome some of our newest members. Please welcome @libranchick, @carlburnett, @silvergramma, @missyjstorm, @skygerhart, @judith687, @njf6, @kauthement, @debbiethornbury, @mosessaloe, @tanyamichelle, and @jhill835. I hope that I did not miss anyone.
If you have not yet, please introduce yourself a little. Here are a few suggestions to help.
Your name and location?
Are you a 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 look forward to learning more about your PH journeys. If y’all have any questions about the PH forums, please reach out to me or @colleensteele.
Often our newer members prefer to read and later decide to comment. That is perfectly fine, whatever you feel comfortable doing. We hope to offer a safe and comfortable environment.
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Welcome new members! I’m sorry you have a reason to be here but I’m so happy you found us. We are very kind and supportive to one another here so don’t hesitate to ask questions and/or share updates.
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I was diagnosed this March 2024. I was sent to the ER after visiting an urgent center in San Antonio Tx for super fatigue and trouble breathing while walking in the mall . I thought I had been struggling with Long COVID ( which has similar symptoms).
I had uncontrolled high blood pressure and an embolism in my lung. After being in the hospital with all kind of tests including right heart catheter and TEE and the crazy shots in the stomach that leave you so many bruises they sent me home with Eliquis and new blood pressure meds..
I am still struggling with a pressure between the shoulder blades that goes up my neck. I was told I may have PAH but now they tell me I may have CTEPH. I am going for a lung profusion test next month. Also I have just been prescribed Adempas. Anyone taking this drug?
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Hi @Carm, welcome to the forums. I’m sorry you are getting the runaround and going through so much with the testing and symptoms. It can be frustrating and overwhelming. But we are here and happy to support you on this new journey.
Are you seeing a knowledgeable PH doctor? I also have a long-term PHriend who is an excellent PH support group leader in the San Antonio area; she’s fantastic. She sees her PH team in Houston. I met her in person last week at the International PH Conference. If you are interested, I’m happy to connect you two.
CTEPH is a type of PH. It sounds like this is what type you have. The link to that for more information is below. Also, PHA offers a CTEPH telephone chat, and one of our forum members,@Terese Tuohey, just spoke about her experience with CTEPH at the conference, along with a well-known PH doctor in Houston.
https://pulmonaryhypertensionnews.com/thromboembolic-pulmonary-hypertension/
I’ll also tag you, so you should see it in a post where we discuss experiences with Adempas. I’ve been on it for a short time, but it wasn’t the best for me because I am not one with CTEPH.
It’s challenging but manageable, and I’ve been diagnosed almost twenty years. The options for treatments are tremendous, and more are in the pipeline. We are here and ready to help support you along this journey.
pulmonaryhypertensionnews.com
Thromboembolic Pulmonary Hypertension
Looking for reliable information on Thromboembolic Pulmonary Hypertension? Find out everything you need to know here.
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Welcome to the group!
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Welcome Carm, I am so sorry you are going through the wringer and rollercoaster all at once. It sounds like your doctors are getting very close to a diagnosis and start treatment.
I was diagnosed with PAH neatly 19 years ago. I do not know the medication you mentioned – there is so much more out there today. Make sure you ask all your questions ( I usually write them down before my appointment so I don’t forget). It is also so important that you let your doctor knows of any side effects so they can be on top of that quickly. You, are your most valuable advocate!
I believe you will find so much support in this forum so please reach out. I wish you positive thoughts and vibes and send you warm hugs 🤗 full of energy.
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Welcome Carm! My name is also Colleen. I have been on Adempas for over a year and it has been a very successful drug for me! I had very limited side effects for me. I hope and pray it works for you.
Each individual has their own journey but in this forum you will find phfriends and all of the support in the world!
Please ask your cardiologist or pulmonologist about the new drug Solarcept or Winrevair. It fights PAH in a new way, it was recently approved by the FDA.
I also had a lot of help with choosing insurances through my county office of Aging and my copay are almost nonexistent.
Please ask me anything; I’m an open book. Please let me know how I can support you with your journey; you are never alone.
Please take the best care and always be kind to yourself. I know this is a challenging time; please use us as a resource!
My Very Best,
Colleen McG
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Hi @Carm and @Col, What a wonderful welcome here! It makes my heart happy to read how supportive each forum member is. We’re all PHighting this battle, but despite how we manage our plates, it’s always thoughtful to help others! That’s what makes the PH News forums such a close-knit space.
Colleen, you are so strong and inspiring as you begin your journey and become new to the forums. Your contributions to others are so kind, and I know being vulnerable here is safe. 💫
Hugs, and have a wonderful Monday to you both!
💜🤗🌞
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Hello Colleen!
I started with the Adempas and only took two pills ( 1 mg) and my Bp went too low and I was headachy and scared.. So I stopped it and asked them to start me with the lower0.5 dose which comes in tomorrow.. I am fatigue, my head is dizzy when I stand up and can barely walk to my car or store entrance. My NT pro BNP IS 2354 and I am scared.. I am new to this. Looking and needing a wheel chair is mind boggling… I will try the Adempas again and hope I don’t feel the side effects… they did lower my Bp medication finally…Any advise would be appreciated…
Carm
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Hi, I’m sorry you are having issues with the Adempas. Did your doctors think lowering your BP med and adding Adempas at a lower dose would work? It sounds like you have an issues with low BP but I also wonder why you are on BP medications.
It seems like the Adempas would be most important, maybe after time, they will see you don’t require BP medication. But your medical team would be best to take care of this because they know you well.
My apologies if you’ve alreday shared, but are you see at a PH Center or by a knowledgable PH specialist? I’ll share the link below for finding a PH doctor by adding your zipcode.
https://phassociation.org/patients/doctorswhotreatph/
Adempas can be used for other PH patients that don’t have CTEPH. But there are also a variety of other traetments, and I wonder why they have not suggested a treatment plan with your elevated BNP and severe PH as you mention. This is why we always recommend a knowldgable PH team, and you may see one and this also is so varied based on other healh confditions, etc.
I use a wheelchair for longer distances and have a disability license plate. It was difficult for me to accept that and my oxygen when I was diagnosed around the age of 29. But been there and we are here to support you along this journey.
phassociation.org
Doctors Who Treat PH - Pulmonary Hypertension Association
DOCTORS WHO TREAT PULMONARY HYPERTENSION PHA provides the following lists of physicians who treat PH as a service to patients and does not specifically endorse any individual physician. All information has been provided by the doctors so that you can … Continue reading
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Also I just had a VQ scan and I was told I do not have CETEPH. But that the Adempas was still the treatment for Severe PH. So… I am going to try it again.
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Carm,
I know you have read this whole forum, but thought you’d find my update useful. I reacted badly to Adempas – got the mother of all migraines, and the rest you can read from 2020. About a month after starting Tadalafil, my doctor suggested adding Opsumit, as it worked well with Tadalafil. I have been on that since with no problems. In the last 2 months I shifted over to Opsynvi, which is one pill that combines my does of Tadalafil and Opsumit. The switchover was seamless, and my psyche is happier with 1 pill instead of 3! Perhaps your doctor will suggest this combination for you as well. I pray you find improvement.
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Hi, @Terese Tuohey.Thanks for sharing your experiences with Adempas and now Opsynvi. Your experiences will help her learn about possible options and how each treatment affects us differently.
I’ll also share a link to more information about Opsynvi below, as we discussed when it was approved. Yes, one pill versus three is a win-win for you. Plus, it is not the horrible side effects you experienced with Adempas.
Have a wonderful weekend, and know I am sending you extra hugs and love. 💜🤗
pulmonaryhypertensionnews.com
Breaking News: FDA approves Opsynvi as 1st single-tablet PAH combo treatment - Research and Development - Pulmonary Hypertension News Forums
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Hi Carm, Jen and Terese!
Carm, maybe Adempas is not for you. I think that Terese had great advice; there are many drugs that are out and new ones going through clinical trials and later getting appoved.
I know it’s extremely overwhelming and difficult not to “go down the rabbit hole” but there is light and ease coming for you, my friend.
I had a very bad reaction to Tyvaso DPI. Carm, each of us are different in what drugs work, but we are on the same journey.
Patience is not easy through this process. I know first hand. But please be kind to yourself. You will find the right combinations of medications. You will feel better.
If you ever want to email me, please do at [email protected]. I always check email. I want to support you however I can.
And the greatest people in the world 🌎 are on this forum. Full of incredible knowledge and experience. Keep phfighting, my friend. It will ease up a bit and then you’ll be in a better place! 💕💖💕💙🫁💙
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